Crossing the border

Could Sania Mirza’s wedding to banned Pakistani cricketer Shoaib Malik be an inspiration for many others to look for a match across the border? It defies the very Indian question as to why anyone would want to marry a Pakistani, but going by a recent survey conducted by the popular matrimonial website Shaadi.com, the trend seems to be changing. Almost 61 per cent of the survey takers said they wouldn’t mind looking for their spouse in neighboring Pakistan. Nepal came in second with 28.9 per cent votes, followed by Sri Lanka at 26.4 per cent and Bangladesh at 9.9 per cent.
The survey titled Love Across Boundaries, taken by over 9,500 Shaadi.com members over three days, brought about these astonishing results. Of the total respondents who took the survey, 12.7 per cent said cross-border marriages were all hyped up and 77 per cent said, in reality it is the compatibility between the two partners that matters.
Does this mean people are opening up to finding a life partner across the border? “We have to keep in mind that the declared response is always very different from the actual behaviour or preference. Every interaction with a person from another country may not culminate in marriage. Though the levels of openness have changed, we are still not expecting the above results to take actual shape,” Gourav Rakshit, business head, shaadi.com, said.
Inspired by the furore over the Sania-Shoiab marriage, the survey also asked members their view on the hyped wedding that hit headlines. 59 per cent saw this in a positive light and thought it would help bridge the distance between India and Pakistan. Surprisingly, only 7.4 per cent said it would be a rough ride for the two of them while 33.6 per cent said it wouldn't make a difference either which way.
With 20 million members on board in its portal, 75% being from India, shaadi.com also claims that its not as if a majority of survey takers were Muslims. “It’s all about the changing value system. Though marriage decisions still depend on compatibility, people may be able to get over the border barriers in next 10 years,” said Rakshit.

Stateless toddlers

It is a harrowing tale of legal tangles, unending wait and dying hope for Germany’s Jan Balaz who has been running from pillar to post trying to take his twins back to Germany. Born through surrogacy the twins are nationals of nowhere and are living in Jaipur with their grandmother as their father fights their case in Supreme Court and their mother goes back to Germany to keep her job and keep the funds flowing. It has been a two-year-long plight even as Balaz has sought all routes to somehow get these children home.Nidhi Mittal tells you why it is still a deep long tunnel for this unfortunate foreign family

You may call them citizens of nowhere or, more indulgently, citizens of the world. But Nikolas and Leonard, all of two years, may use up their entire life to get one, not just a nationality but also parentage despite having a biological father fighting for them.
Nikolas and Leonard were born around in Anand, Gujarat but they are neither Indian citizens nor Germans, as their parents, rather commissioning parents as the court of law likes to call them.
Born to a surrogate mother, the twins are ignorant that their “commissioning” mother has left for Germany after a long wait in India to take them with her while their father is fighting a legal battle to get them a passport — Indian or German.
And, Jan Balaz is a tired man. Fighting a lawsuit in a foreign country and not being able to take his children back home to Kempton in Germany, has made him look older than he is. “It’s not easy but do I have another option? They are asking me to adopt my own children. What could be more distressing than that? But that’s the only way I can possibly get them a passport or a visa,” says Balaz, talking about the German Government’s suggestion about an inter-country adoption which the Supreme Court has agreed to.
When Balaz decided to come to India to have children through a surrogate mother, he did not know that in Germany, surrogacy is a punishable offense. All he knew was that in India surrogacy is a popular activity, that too cheaper than in Europe or the US where the law recognises it. He went by reports of international citizens having successfully got children in India and gone back home to a happy and fulfilled life.
Hoping to do the same, Balaz and his wife Susan Lohle contacted Dr Nayna Patel in Anand. While they arranged for their long stay in India, Dr Patel picked out a woman who was ready to bear a child for them. Having got a surrogate womb, eggs from yet another woman and sperms from Balaz, the couple lost no time in starting the IVF procedure in early 2007. Luckily for them, the woman conceived immediately. “I saw the Anand facility on a news channel once in Germany. At that time, we were looking for options to have a child. That is how I decided on India. I was told it (surrogacy) keeps happening here. We were happy when we saw a positive response from everywhere,” says the father of the twins who are now in Jaipur where Balaz’s mother is taking care of them in the absence of Susan.
Susan had to return to Germany recently because she had exhausted all her work leave. She works as a helper in a day care centre in Kempton, while Balaz is a freelance photographer, with “no special interests. I do all kinds of photography for magazines and journals,” he tells you.
Balaz also tells you how his mother has not gone home for three years now and has been with him in all this. “She has been in India for three years because we can’t take the kids to Germany owing to the insensitivity of authorities. However, Indian courts have been quite kind to us,” he insists, pointing out how the Gujarat High Court ruled that his children should be given an Indian citizenship and an Indian passport. However, due to lack of any surrogacy law for international citizens, the Union Of India challenged this ruling in the Supreme Court.
SC, though, is considerate about the fate of these Stateless children, but has its hands tied due to the lack of any specific rule or law on surrogacy, which is estimated to be a Rs 5,000-crore market in India. It is actually the stringent German law that makes things difficult for everyone in this particular case. The German Embryo Protection Act, 1990, states that “anyone will be punished with up to three years imprisonment or a fine, who transfers into a woman an unfertilised egg cell produced by any other woman… or attempts to carry out an artificial fertilisation of a woman who is prepared to give up her child permanently after birth (surrogate mother) or to transfer a human embryo into her.”
The law makes surrogacy a crime and refuses to recognise as German citizens children born thus in any part of the world. Balaz’s big mistake was that he simply did not know of this till he applied for a passport for his twins. That was the time that the legal battle started. It was difficult for him to try and understand all the intricacies of the laws of the two countries, and didn’t understand why is it that his children can’t be Indian citizens when they are born on Indian land to an Indian woman. For now, Balaz keeps shuffling between Delhi, where the case is in Supreme Court, and Jaipur, where he has rented an accommodation and lives with his two children and mother.
Now that he has accepted that there is no other way but to adopt his own children, one more address has entered in his list of places to rub his feet — the Central Adoption Resource Authority (CARA). CARA is the Government agency which processes all adoptions, including the inter-country ones. Balaz has spoken to the head of CARA but is yet to see hope as “the agency says it will have to look into the legal implications of such a case.”
On their part, CARA sees scant hope for the man and his children, though the chairman of the central agency insists that he is yet to receive and study the document containing the directives from SC. “I can’t say specifically what would be the outcome of this case since I still don’t know what the SC directive is. But there are a lot of problems with Mr Balaz’s adoption case,” J K Mittal, chairman, CARA, says.
Explaining the intricacies, Mittal says the problem starts right from the fact that Nikolas and Leonard are born through surrogacy. “Surrogacy doesn’t come under the purview of CARA. We don’t have any guidelines on it. Further, since the twins are Balaz’s biological children, how can he adopt his own children?” questions Mittal. The next problem lies in the fact that the two boys are already living with Balaz which is a complete no-no with adoption guidelines.
Mittal, who regularly deals with inter-country adoptions and is currently dealing with four cases from Germany alone, says the problem lies with people who do not find out about a country’s laws and procedures. “Like everything else, they want to take home babies easily. One must take care to read all the guidelines which are not at all difficult to understand,” Mittal insists.
Meanwhile, Balaz’s counsel Nikhil Goel is doing his bit to convince Solicitor General Gopal Subramanium about Balaz’s plight and his sentiment for his children after questions were raised on the possibility of child-trafficking. Balaz has filed an undertaking to this effect which satisfied the SG. On humanitarian grounds, he then said the Government will try to persuade Germany to facilitate a one-time visa for the twins. However, Germany insisted that was not possible and instead suggested that Balaz adopt the children.
It’s not as if the Indian judiciary is not concerned about the fate of these innocent twins. Finding the surrogate babies caught in no man’s land for no fault of theirs, a Bench comprising Justices GS Singhvi and AK Ganguly vented anguish on their behalf: “Should we treat children born out of surrogacy as commodities?…. Statelessness cannot be clamped upon children. There must be some mechanism by which they get citizenship of some country. Children should be allowed to leave the country after an assurance of their citizenship has been given.”
But where will the assurance come from? According to the Indian Citizenship Act of 1955, children of a foreign couple cannot be Indian citizens and surrogacy does not find a mention anywhere. Though a Bill was floated in the Rajya Sabha in 2008, there has been no follow-up action on it. It was the 228th report of the Law Commission that demanded legality for surrogacy. However, there was a slight change in the treatment to surrogacy 2003 onwards. With the Baby Manji case, surrogacy got more recognition and came to limelight.
Returning to Balaz and all the odds he has been facing in getting his babies home, he nevertheless insists that his overall experience in India has been a pleasant one. “I like Indians better than Germans. They are more warm and helpful,” he says. However, there is a contradiction when you ask him why he chose Jaipur as the city of his residence. “Indians look at White people strangely. We are treated strangely too. I think there should be friendliness towards Whites which I found in Jaipur. Maybe because Jaipur sees more international tourists every year,” he explains.
The twins, born on January 4, 2008, may never know that Susan is not actually their mother, or who gave birth to them. As part of the contract, their surrogate mother Martha Immanual Khristy will never contact the German couple. The 28-year-old woman has her own two children. She rented out her womb for Balaz and Susan to earn enough money for her six-year-old daughter and four-year-old son as she was struggling to make ends meet till the time she registered for surrogacy at Dr Patel’s clinic in Anand.
For Dr Patel, this was the first German couple and she was unaware of German law. “Such legal tangles should not be there. The couple should have found out before they set out for this. Mr Balaz’s case is unique. Otherwise, I have not seen any legal problems cropping up with foreign couples so far,” says Dr Patel, who gets almost 40 couples a year seeking a surrogate child.
Her facility boasts of an ever increasing number of registered women who want to be surrogate mothers. “I have more than 200 women from various backgrounds registered. It is through artificial insemination or IVF that they become pregnant. However, the success rate is only 20 per cent, but couples keep trying till the time they get a positive result. And a woman is not allowed to be a surrogate for more than three times. From 2004 till now, I have seen a woman bearing a child maximum twice,” she tells you on phone from Anand, adding that the medical expense of having a baby through surrogacy in India comes around US $20,000.
A good number of salaried middle class women in Anand have taken to surrogacy to boost their earnings. In most cases, they get between Rs 2.5 lakh to Rs 5 lakh per delivery. In the US, surrogacy costs around $50,000, excluding medical bills and charges for agencies which find surrogate mothers. The cost consideration apart, childless couples across the globe choose India because of the refined cultural background of the middle-class surrogate mothers. Dr Patel receives an average of 10 emails a day from childless couples overseas who prefer Indian surrogates because they are generally free from vices such as drinking, smoking and drugs.
Although India’s first surrogate baby was delivered on June 23, 1994, the practice started receiving international attention in 2004 when an Indian woman delivered a surrogate child for her daugther in the UK. Surrogacy in India gained further attention in 2007, when Oprah Winfrey featured a US couple pursuing surrogacy in India on her popular show.
While 2007 figures from the Society for Assisted Reproductive Technology (SART) reported 276 successful gestational surrogate pregnancies in the US, India’s clinics delivered 150 successful gestational pregnancies. This makes India the second most common location for gestational surrogacy. However India, unlike the US and Europe, has clinics that specialise in gestational surrogacy.
The surrogate mothers and parents sign a contract that promises the couple will cover all medical expenses in addition to the woman’s payment, and the surrogate mother will hand over the baby after the birth. Counseling is a major step, and Dr Patel on her part tells the women to think of the pregnancy as “someone’s child comes to stay at your place for nine months”.
All this worked for Martha, Balaz and Susan, though the couple unfortunately got stuck in a legal pool later. Even though adoption may have shown them a way out of the German law, the couple will face another big roadblock for this — the adoption red tape in India. According to the Comptroller and Auditor General report of 2008-09, over 6,000 orphaned children in Gujarat don’t have legal parents since 2004, either because agencies did not file their cases on time, courts delayed adoption procedures or agencies broke rules, thus, invalidating the adoption. Some children don’t have legal parents for even over four years when they are already in school.
As per CARA guidelines, the adoptive parents can take the child on pre-adoption foster care after signing a foster care affidavit. The State Government then has to ensure that the adoption is legalised within six months. The CAG report states that as per guidelines, the agencies need to file a petition in court after matching, and place the child for pre-adoption foster care to the adoptive parents. However, in Shishu Gruh, Khanpur, in Ahmedabad, six children were given away without completing formalities and siblings were separated, thus breaking rules, notes CAG.
In the Mahipatram Roopram Ashram in Ahmedabad, 23 abandoned children were given away without the paperwork. Rules say that a child can be freed for adoption only two months after it has come to an orphanage. However, Shishu Gruh gave away nine children before completing two months.
The fate of Jan Balaz, Susan and their sons Leonard and Nikolas hangs in balance and in the hands of a blindfolded woman. That’s unfortunate, and it’s scary.

Those genetic killers

Some rarest of rare diseases have been slowly but silently creeping up the medical charts in India. Doctors are as clueless about their diagnosis and treatment as they are alarmed about their occurrence. For those who get such rare disorders, life falls apart not just for the victim but the family too. Treatments, if any, are available only in the US and are out of most pockets. Nidhi Mittal meets up with some of the families tackling rare diseases like Gaucher, MPS and Pompe

They are the flavour of Bollywood now-a-days. If Aamir Khan brought the Dyslexics into news through Taare Zameen Par, Big B Amitabh Bachchan made your heart beat for people with Progeria. Next, Shah Rukh got the Asperger syndrome in My Name Is Khan and now we’re waiting to see Hrithik Roshan as a paraplegic in Sanjay Leela Bhansali’s Guzaarish.
It may help directors and actors looking for the next idea in this genre to read about Pompe, Gaucher or MPS. These are the three rarest of rare diseases people have been getting, but you may be surprised to know that there are around 8,000 known rare ailments in the world.
Unheard of, and with very little awareness about them, Pompe, Gaucher and MPS come as a shock to people who get into their trap – either by suffering themselves or carrying the burden of an affected child. The latter is the sad story of Mr and Mrs Prasanna Shirol.
“It was the biggest shock ever. I didn’t understand what the doctor was saying. I had never heard of it before even though I had started suspecting my daughter was ailing of something big,” says Prasanna, Nidhi’s father. Nidhi, 10, suffers from Pompe, a rare disease that causes muscle weakness, poor muscle tone, an enlarged liver and serious heart defects in infants and juveniles, leading to an early death.
Nidhi has never played outside her home in Bangalore with other children of her age. In Class IV now, her mother accompanies her to the school, carries her to the first floor where her classroom is and sits outside waiting for the bell to ring everyday. Unable to even walk or stand, Nidhi stays indoors after returning home. Her physiotherapist and two friends, who come to play with her only if they don’t want to play outside, are her slimline visitors.
Nidhi, who is put on a ventilator every night, can’t watch TV for more than half-an-hour as that stresses her out. And her slow speed at homework leaves her with no time to pursue her only hobby — painting. “I love drawing but I have to do my exercises, homework, have dinner and go to sleep on time. So I have no time for it now,” Nidhi tells you in a tone that makes you feel she is having difficulty in talking. It takes time to understand her garbled diction.
She insists she wants to be a doctor and treat people in pain like her. Interrupting her on a usual weekday evening while she is doing her English homework, one asks her if she finds it difficult to go to school and pat comes the reply, “I love school and my friends. I don’t take leave unless I am feeling very unwell. I love my class teacher. She talks sweetly to me,” says the child, whose favourite subjects are Maths and Science and likes eating dosa.
“The teachers and students in her school are very co-operative. They don’t treat her any differently. They also let me use the library as I have to spend my entire time there. Though she manages to stand up for a few minutes, she is very slow at other activities. To prevent her from getting infections we can’t take her outside. She spends time watching Discovery and Nat Geo channels and playing with her two friends. The last film she saw was Paa and she loved it. All that we now wish is that she is able to fend for herself when we are not there,” Nidhi’s mother Sharda tells you.
Sharda and Prasanna are brave parents tackling the situation with a smile. They have a next to nothing social life as their time passes in looking after Nidhi whose needs are big. “There’s no free time. I go to school with her and at home have to make sure her daily regimen is followed like clockwork,” Sharda says.
Life has not been easy for this couple. Sharda had to abort her second child as pre-natal tests confirmed the same disorder. That was three years back, and now the couple doesn’t want to take a second chance. “It scares us to think that our second child may also suffer the way Nidhi does,” Sharda says, though going by the textbook, there are 75 per cent chances that their next baby would be normal, with pre-conception medication. “We will just live for Nidhi and her well-being,” she says.
Though Nidhi was born a normal child in 1999, there was a considerable delay in milestones like crawling and standing. She was already two years old and had still not started walking. A worried Prasanna took her to a pediatrician, who said there was nothing to worry about as a few children take time. Unconvinced, he took Nidhi to NIMHANS where the doctor conducted tests and termed her illness as Glycogen Storage Disorder Type II, or Myopathy with no cure.
Nidhi’s muscles got harder and she started facing respiratory problems. Though she could walk till she was seven, a serious respiratory attack made her condition critical and she had to be hospitalised and put on ventilator. Tests then determined that she actually suffered from Pompe, a type of Lysosomal Storage Disorder (LSD), one of the 15 categories of rarest of rare diseases.
“I read up a lot on the disease and found that there was no drug to treat this disease. However, in 2008, a drug called Myogen came in but only in the US, that too at a very high price. Only one company — Genzymes Corporation — sold it. Though there was a charity scheme to provide the dose free, it favoured only children less than a year old. I got in touch with the International Pompe Association as there was no office in India. Fortunately, I convinced them about my daughter’s case and they made it free for her,” Prasanna says.
Enzyme Replacement Therapy alone costs Rs 8 lakh a month, with one infusion needed after every 15 days in a patient like Nidhi.
Nidhi got her first medicinal infusion in April 2008, two years after she was diagnosed with Pompe. What delayed her early treatment was the doctors’ lack of awareness and a late diagnosis. “People come to Delhi from across India with such rare diseases because not many hospitals have the facility to diagnose them. Specialised tests like urine metabolic test, MPS quantification, electro-therasis and enzyme analyses of the blood are unavailable at most hospitals. A majority of such diseases manifest themselves in the first two years of life. We need to get to the bottom of the genetic disorders but this will not happen till genetics becomes a college subject,” Dr Ratna Puri, consultant, Department of Genetics, Sir Gangaram Hospital, explains.
In simple terms, Pompe is an inherited disorder caused by the build-up of a complex sugar called glycogen in the body’s cells. The accumulation of glycogen in certain organs and tissues, especially muscles, impairs their ability to function normally. Researchers have described three types of Pompe syndromes which differ in severity and the age at which they appear. They are known as classic infantile onset, non-classic infantile onset and late-onset.
Nidhi’s is the non-classic form of infantile onset Pompe disease. It is characterised by delayed motor skills (such as rolling over and sitting) and progressive muscle weakness. The heart may be abnormally large but affected individuals normally do not experience heart failure. The muscle weakness in this disorder leads to serious breathing problems and most children live only into early childhood. “Pompe doesn’t affect the brain and that’s why the enzyme replacement therapy works. Difficult to avail unless the company sponsors it, the therapy doesn’t work for rare LSD diseases which affect the brain also, like the MPS-II. Nidhi is showing good improvement with the vials she takes every 15 days, but there was a time when she was hardly expected to survive,” Dr ML Kulkarni who diagnosed the disorder in Nidhi, says.
A pediatrician with special interest in genetics for the last 30 years, Dr Kulkarni of the JJM Medical College, Davangere, however, says that the company supplying drugs free of cost is misleading patients. “Companies are attracting people by offering incentives. They are giving the treatment free for eight to 10 years but it is a lifelong treatment. After that period is over, they will have to pay for the expensive therapy, and not many can afford it. Hopefully, 10 years from now, we may have cheaper drugs or better treatment,” he says. Genzymes provides free medication to about 70 patients across India.
Prasanna says there are six known Pompe cases in India and it’s a life threatening, debilitating disease which can cause an early death if it goes untreated. It affects the normal growth of a child, so much so that the patient also finds it difficult to hold his head, says Prasanna, talking about a film released in the US — Extraordinary Measures. Starring Brendan Fraser and Harrison Ford, it is a true story of a parent trying to save his two Pompe daughters.
Saying he was lucky to have found the information and drug for his daughter in time, Prasanna feels it is important to spread awareness among uninformed people. “I got in touch with several doctors who saw patients with rare diseases. Finally in September 2009, eight people from different States came together to form the Lysosomal Storage Disorder Support Society of India (LSDSSI), of which I am the President. We observe February 28 as the International Rare Disease Day,” he tells you.
It was through this society that one came across Delhi-based Manjit Singh whose two sons suffer from yet another rare disease called the Mucopolysaccharidoses or MPS.
Nineteen-year-old Prateek and 17-year-old Pradeep were diagnosed with MPS-1, a rare genetic progressive disorder in 1995. However, it was only in 2006 and several doctors, diagnosis and tests later that it was concluded that they suffer from MPS-2, a very severe disorder.
Manjit has not been able to get proper treatment for his sons as the therapy costs him Rs 2 lakh per infusion for one son. An infusion is needed every 15 days, which means Rs 8 lakh a month for his two children on just infusions.
He has not been able to get a sponsored treatment so far as his sons have grown up and the global charity favours only younger children. Both brothers are short with Prateek standing at 136 cm and Pradeep at 134 cm. They suffer from hearing problems (especially in winters), insomnia, hernia (for which they have been operated), brittle skin and hair, among other issues.
Born normally to normal parents, Prateek started getting skinny when he was five. The parents thought it to be routine weight loss during growing years. When Manjit noticed a defect in Prateek’s gait and his fingers concaving, not allowing him to open up his palm completely, he took him to an orthopaedic who said the child had tight bones, nothing more serious.
“Then his vision started blurring but even the opthalmologist felt it was not something serious. Next, a cardiologist found leakage in one valve and an enlarged heart. He was the one who first suspected MPS. In 1995, we went to Sir Gangaram Hospital which didn’t have the equipment to conduct confirmatory tests so we went to AIIMS where MPS-1 was confirmed. My younger son was two then and doctors told us to test him too. He, too, tested positive,” Manjit recalls.
Till 1999, there was no treatment available for MPS-1. The condition of the brothers kept getting worse and in 2006 it came out that they actually suffered from a more serious disorder, MPS-2. By that time, both had had hernia on both sides and had been operated on one side. Pradeep had a leakage in the heart. MPS-2 damages the patient both physically and mentally. They stop growing physically but their organs grow normally leaving little space in the body, causing multiple problems.
In this rare disease, bones become so weak that fractures occur without any stress. In 2008, Pradeep suffered a “pseudo-fracture” of the hip which took him months to recover. “It all happens due Vitamin D and Calcium deficiency,” Manjit, co-ordinator and treasurer of the LSDSSI, says.
Manjit’s problems had just begun. In August 2009, Prateek had a pulmonary spasm which didn’t get detected in the X-ray but damaged his heart. He fell unconscious, was put on a ventilator and doctors all but gave up on him. However, he was destined to live.
The two brothers no longer go to school, having left studies four years back, after Class X. They studied normally till Class V but were promoted in the next three classes to keep up their morale. Their condition had a fallout on their behaviour. They wouldn’t go alone anywhere and found it hard to gel with classmates. The parents finally decided to keep them at home though they insist that the people at school were kind and co-operative.
“They are jovial boys. Prateek spends time watching TV. He likes old films and is an Amitabh and Dharmendra fan. Pradeep, on the other hand, is an Internet and video games buff. He plays PS-3 the day long and manages some badminton too,” Manjit says. At age 17 and 19, the boys love watching cartoon films and children’s shows like Son Pari and Shararat.
Manjit tells you that there are three lakh LSD patients in India. LSD is a group of 40 genetic rare disorders of which MPS is most common. Dr Kulkarni who comes across three cases of Pompe and two cases of Gaucher a year, witnesses almost 20 cases of MPS annually, says South India is high on genetic disorders majorly because people marry among blood relatives.
“Inbreeding is common in Andhra Pradesh, Karnataka etc, while its only two per cent in north India. Parents are the carriers of the bad gene which is one in a lakh people,” he says.
By gaucher!
Twenty-year-old Shashank Tyagi is finally leading a normal life. He is not in pain anymore, goes to college, meets people and hangs out with friends often. It was nothing like this till four years back. From age five, he started facing problems, the cause of which no one could determine. His spleen increased along with the liver, he became over-weight and had a protruding abdomen; eye sight became very weak and bones fragile with him fracturing his left hand without any apparent stress. All this while Shashank took ayurvedic treatment which showed no results.
A resident of Ghaziabad, Shashank was taken to the Kalavati Hospital in 1998. He underwent tests but doctors couldn’t pinpoint the cause of his problems and vaguely suggested a bone marrow surgery. “It’s a painful process and so I didn’t go for it. I went back to ayurveda which provided no relief. In 2004, I went to AIIMS because my liver had enlarged and I had started throwing out whatever little I was eating. My BP dipped and haemoglobin was as low as 8,” Shashank recalls. And, he was only 4 feet tall.
In AIIMS he was diagnosed with Gaucher Type-1. The treatment was too expensive, so Shashank helplessly carried on with ayurveda. He then got to know about the Christian Medical College in Vellore where Dr Sumita Danda, professor in clinical genetics, had been dealing with rare cases. “I owe it to her as she was the one who told me that bone marrow surgery was not required and referred me to the global charity. That’s how I could get medicines free. I had my first infusion in 2006 and I am feeling much better since 2007,” Shashank says. He now weighs 48 kg and is 162 cm tall.
“Gaucher has been there for a long time, but it’s only now that we can detect it with the help of clinical genetics. The enzyme test critical to diagnose rare diseases is available in either CDFD, Hyderabad, or Sir Gangaram Hospital, Delhi. Due to lack of research, the treatment is difficult. Genzym Corporation provides free medicines. Recently an eight-year-old Gaucher patient has got it,” Dr Danda tells you from Vellore. Gaucher is an inherited disorder affecting many organs and tissues. Symptoms vary widely. There are three types of Gaucher of which Type1 is common. Main signs include enlargement of liver and spleen, low red blood cells, easy bruising due to decreased platelets, lung ailments, fractures and arthritis.

Hyperlinked to life

He wanted to do something that would help save lives. He then stumbled upon the idea of launching a website that would facilitate blood donations. What followed was indianblooddonors.com. Rest, as earthquake hit Gujarat and terror struck Pune would tell you, is history. Khushroo Poacha’s online forum has registered people from across India as blood donors who can rush to their hospital on an SMS to give blood. It’s an anywhere, anytime virtual service which works on a very novel format. NIDHI MITTAL tells you how a Railway official and his wife, from Nagpur, manage donors all over India, and turn up as messiahs in anyone’s time of crisis?

The bomb blast in Pune ripped apart the trademark German Bakery and everyone geared up to do his bit in the hour of crisis. Someone far away in Nagpur, however, made a lot of difference. A phone call from a relative during a dinner outing informed him about the blast and the super activity that followed on his part helped save many a life all the way in Pune.
Khushroo Poacha rushed back home and called up a news channel while on his way, requesting them to put his mobile number on the running ticker so that people in Pune could register as blood donors by sending an SMS. Within 5 minutes the scroll was up and in the next 10, the SMS server crashed with hundreds of messages pouring in from people wanting to donate blood.
“I immediately contacted Dhirendra Jain who was on vacation. He connected to our server through the net and set right the problem and monitored the system till 3 am that night. I also woke up Deepak Arora, CEO of Saltriver Systems, who co-ordinated putting up the SMS server. I then spoke to technicians in blood banks at the Inlaks and Budhrani Hospital and the Jehangir Hospital in Pune to let us know when they would need blood so that we could co-ordinate the donations through our SMS network,” says Poacha who’s initiative helped saved many lives in Pune.
The use of mobile phone to instantly provide blood donors was a great idea which Poacha executed recently. However, it all started with a website.
It was, indeed, an unusual night for young Poacha. It was the first time he was spending so many hours inside a hospital. His grandmother had slipped into coma at the Government hospital in Nagpur and he was by her side throughout. Sleep was impossible in the uncomfortable room meant only for the patient. A drowsy Poacha sat on a bench in the corridor when, around 3 am, he heard a commotion.
He went towards the group of people shouting at someone. Poacha was shocked to see that some men were beating up a doctor while a few women were standing there, sobbing. They were relatives of a patient who had just passed away. “I pushed them away from the doctor and asked them why they were thrashing him. They said, the doctor had killed their patient. The doctor told me how the patient needed blood and how he had asked them to arrange for it which they couldn’t and that’s why the man died.”
Though things cooled down after that, I was left wondering. Since my grandmother also passed away some time later, this incident got stacked in my memory,” Poacha recalls. This was 1994.
In 1999, when Poacha got married and was buying furniture for his house, he visited a shop owner. However, despite three visits to the shop, he could not meet the owner to fix the deal. Irritated, he gave him a call to tell him about the urgency for the furniture. The shop-owner said he was too busy to come as he was trying to arrange blood for his neighbour. The patient needed ‘O negative’. Poacha had donated blood several times and had acquired a voluntary blood donor card which allows him to withdraw blood at the time of need. He immediately went into action but could not find ‘O negative’. Finally, only one unit could be found but it was too late — the patient had lost his life. The incident took Poacha back to 1994 and he felt he needed to do something better for people needing blood.
Thirtytwo-year-old Poacha was also going through a crisis at that time. His wife had just had a miscarriage and the chances of her conceiving again were bleak, according to doctors. Poacha thought, what better way to come out of grief than help others in their desperate times. The thought worked well. He told his wife he would do something to help people all over in India and with her eagerness to join him in his novel campaign, the couple launched a drive to figure out how.
It was during a conversation with friends in a cyber cafe that the Poachas stumbled on the idea of doing something through the Internet. “I did not know head or tail of Internet business, but I had an intuition that it would make a difference. Over the next few months, time went by learning more about the medium. I liquidated all my savings to purchase a domain name,” says Poacha. The rest, as doctors in Pune would confirm, was one big helping hand — anywhere, anytime.
It’s been 10 years that indianblooddonors.com came into being and it has been helping save many lives. However, when relatives heard that Poacha had spent Rs 1 lakh on this uncertain initiative, they went ballistic. “Why will unknown people come to help unknown people,” they wanted to know? But nothing deterred Poacha who works with the Indian Railways. His wife is as an administrative officer of a private school. The couple’s income, at that time, was barely enough for making ends meet. “There were many occasions when unpaid phone bills would be lying in the house and there would be no money to clear them,” Poacha recalls, adding that “things always have a way of sorting themselves out. And mysteriously during such times, a cheque would make its way into the mailbox.” An organisation from San Jose in the US sponsored their phone bills while a Supreme Court lawyer silently left a cheque of Rs 1,001 with a note saying, “good job done”.
So how has he managed to sustain this unique website for so long? “Internet hosting used to happen from abroad at that time. So, initially I accepted a few donations coming from various circles and when the media started reporting about us, we became a little popular and started getting many hits on our website. It was only later that website hostings were made free. I had to shell out Rs 2,000 per month for the site,” he tells you, saying that he has faced several questions about money and has given only one answer to everyone doubting his intention. “How did Mother Teresa do it all over the world? My effort is relatively smaller and easier. I don’t accept monetary donations now. People are welcome to contribute in kind by way of stamps, paper etc to make the website as popular as possible,” says Poacha. He is now a popular figure globally and has been invited to various debates, including one in South Korea.
Visibility, however, was an issue initially. No publication was willing to write about him. No major hospital or blood bank was interested in taking his calls. And then the 2001 Gujarat earthquake happened. As visuals of the devastation flashed before his eyes on TV, Poacha realised yet again that he had to do something. Only, this time he knew just what. “I called up Zee News and requested them to flash the site’s name on the ticker and they agreed. Over the next three days I received 3,500-odd registrations by potential donors,” Poacha recalls.
Corporate houses have been wanting to join Poacha’s effort but he has so far kept them at bay in what he fears would turn into crass commercialisation of a noble cause.
It was Catch-22 for Poacha, however, when his boss’ son expressed the desire to buy his website for Rs 3 lakh. He even offered Poacha a partnership and a stake of 25 per cent in the venture. Though Poacha was tempted, as he was practically bankrupt by then, he said no. “After my refusal, by boss started misbehaving with me. He would fire me for no reason. But I stood my ground,” says the 43-year-old who was also approached by venture capitalists but and gave them the same answer.
Stories of people being helped by the website are numerous. “The portal and the listed donors were a great help and out of the 24 donors that they listed to us from Gurgaon with O+ group when we logged in, almost all got back and those who had not donated blood during the last 90 days made their donation. Offers kept pouring in but by then I had lost my sister-in-law. Gurgaon was a new place for us with no relatives and a huge requirement of blood — more than 100 units — we did not know what to do. We had over 200 people donating blood for our patient, all through indianblooddonors.com. This was overwhelming and unbelievable,” Bhawna Bairoliya tells you.
“It is a wonderful experience to get help from people you have never met in life. It restores your faith in human goodness. Once again I thank you for all the help I got from this organisation,” blogged Ramchandra Phawade on the website.
The portal today has 50,000 registered donors from different parts of the country. And Poacha’s just launched mobile phone initiative has registered at least a 1,000 registrations a month. Poacha is now running another initiative www.givemedicines.org which is about donating unused medicines to needy people.

How to
Register as a blood donor : SMS BLOOD to 9665500000
Example : BLOOD 011 B+ve
Search for blood donors: SMS DONOR to 9665500000
Example DONOR 011 B+ve
Search for blood donors in your area:(Especially to be used in Metros) SMS DONOR PIN to 9665500000
Example : DONOR PIN 110002 AB+

Pray against this

If you have cancer, you know that you will either die or go through chemotherapy and get well enough to go on with life. Talk to Madhulika and she will tell how, if she had a choice, she would have preferred cancer. You tend to agree with her because she, and a growing number of Indians, are being struck with a hitherto unknown disease called Multiple Sclerosis which basically cripples your nerves. It’s origin is unknown and a cure, even medication, has defied intense global research. Nidhi Mittal tells you how this devastating, degenerative and yet death-defying disease is fast catching up

If you heard her singing from a distance, you would be convinced that Geeta Dutt had come back to life; her bold strokes would often make a canvas come alive; parties never really took off without her as she would be the showstopper on the dance floor. Her laughter was as infectious as her personality was vivacious. Back home she was an uncomplicated, simple girl who prayed religiously, took care of her widowed mother and was honest to her journalistic job.
Then came December 2004 and everything changed without a warning. She was married now to a gem of a person and had a 10-month-old son on whom she doted. A patch of numbness above her knees did not bother to tell her that her horror story had begun.
From unstable gait, to loss of vision to incoherent vocal chords, to loss of bladder control. From the floor to the wheel chair to the bed. From cooking herself for the family to being fed with a spoon that too with a lot of difficulty, she had been reduced to someone you would have never known.
Friends fell off her radar, hope died a slow agonising death before her eyes; and soon her son too would not want to come near her. On very good days, she could be made to sit up for a while with pillow support. On bad days, she would fall off her wheel chair due to violent and uncontrollable body convulsions.
In the five years that this couple went from doctor to doctor, hospital to hospital, Madhulika lost everything — her vision, her legs, her body functions and soon she was reduced to constantly beg for death — something no one, not even destiny was willing to accord to her.
In all this, it was either superhuman or plain incredible that her husband, who was married to her for just one year when MS struck her, has stood by her like the rock of Gibralter. Such is his commitment to his ailing wife that doctors attending on Madhulika have bestowed him with sainthood.
Sitting next to his depressed wife, Shankar looks amazingly matter of factly. He tells you how for an entire year he took Madhulika from one top hospital to another but no one could relieve his wife from what kept happening to her.
A year of these senseless rounds later, in December 2005 the couple finally got to know what Madhulika had been afflicted with. It was Multiple Sclerosis (MS), a deadlier than deadly disease which hits the central nervous system. It does not kill you but slowly degenerates your muscles and nerves, crippling you forever.
“I had no idea what it meant. I was hearing the word MS for the first time,” recalls Shankar five years later. As he recounts their travails, a bed-ridden Madhulika tries to focus on this reporter — she has all but lost her vision as she has cataract in both eyes but can’t be operated as this would interfere with her intense MS medication.
“Everything went on smooth till this tragedy struck us,” she says. Dressed in a hooded orange sweatshirt covering her head and blue lowers, feet in socks, she asks her husband to put on the room heater as she tries to adjust to the sunlight pouring in from the balcony.
Initially, it got difficult for her to walk and she went to an orthopedist. Nothing came of it. A few days later she had a bad viral attack. On medication for that, everything around her started looking blurry and she would constantly feel there was not enough light around. “We suspected it was something serious. I took her to her doctor uncle in Apollo Hospital who made her undergo tests,” Shankar tells you. The diagnosis? Brain tuberculosis. The couple were devastated even though doctors said it was curable.
Of course, the worst was yet to come. Madhulika was put on steroids to help her weak legs gain strength and restore her vision too. “The strong TB medicines made her feel worse and she decided to be off them. As soon as she did that, her legs started giving way suddenly.
She could, meanwhile, barely see. Several bouts of infections later, she was a broken and scared person — she went back to her TB medication. Finally, some super-speciality tests and MRIs revealed that it was never TB but an unknown disease called MS.
For 40-year-old Madhulika today, life is a burden which she says “my husband is carrying on his shoulders.” Bed-ridden for most of the last five years, Madhulika cannot read or watch TV and has nothing else to keep herself involved with the whole day. Such is the effect of MS which is in the secondary progressive stage in her case.
MS is an auto-immune condition in which the immune system attacks the central nervous system (CNS), leading to demyelination. The disease affects the ability of nerve cells in the brain and spinal cord to communicate with each other. Nerve cells communicate by sending electrical signals called action potentials down long fibers called axons which are wrapped in an insulating substance called myelin. In MS, the body’s own immune system attacks and damages the myelin. When myelin is lost, the axons can no longer send signals.
MS takes several forms, with new symptoms occurring either in discrete attacks (relapses) or slowly accumulating over time (progression). Between attacks, symptoms may go away completely, but permanent neurological problems occur, especially when the disease advances.
MS is a mysterious disease which affects almost 1,00,000 people in the UK, 4,00,000 in the US and several million worldwide. There are no figures from India as no survey or study has yet been conducted but it is alarming to know from doctors that incidence of MS are getting fast paced in India despite it earlier being tagged as “the White man’s burden.”
Symptoms include loss of physical skills, sensation, vision, bladder control and intellectual abilities. There are several types of MS. Most will only vary in the extent it affects the CNS. The most frequent type of MS is Remitting Relapsing MS (RRMS). People with RRMS experience relapses followed by complete or partial recoveries. This type of MS affects 85 per cent of all MS patients. And the people recovering partially from relapses, which is 50 per cent of the patients, move into the next stage and experience progressive MS with or without recovery.
Till date, the cause of MS is unknown and there is no cure for the debilitating disease. Some researchers say it might be genetic, others talk of environmental triggers.
With no cure in sight, it is the family which needs to be a pillar of strength for patients fighting this progressively debilitating ailment.
Though Madhulika’s husband is clinging to hope, she has all but given up. What hurts her the most is that she could never be mother to her son. “I want to teach him how to paint and sing. I want to help him with his studies. He comes to me and say ‘mumma don’t worry. You’ll be fine one day and we will also go for an outing like others.’ I just want to get a little well so that I can at least give him what he deserves,” Madhulika tells you as her eyes well up and she raises her shawl with her shaky hands to wipe off the tears.
She points out to the once white walls of her drawing room which are now full of colours put on by her son Yash. The crayon and sketch pen marks all across make her smile and she resists her husband’s suggestion of a whitewash saying: “He is a true Piscean like me. He likes to paint and is creative in his own way. We both don’t like eating banana and we both love apples.”
All of six, Yash has now started understanding what ails his mother. “He sits with her now and they also share a joke or two but there was a time when he would come and question me why she never walks and plays with him like other mothers. He would not go near her and would prefer to watch TV instead. That worried me a lot,” recalls Shankar. Neurologist Dr CS Agarwal of the Sri Ganga Ram Hospital, who had briefly treated Madhulika, says men like Shankar are rare. “I have never seen such a caring and loving husband. There were times when Madhulika would lose her temper and insist on giving up the treatment, but this man never gave up,” says Dr Agarwal who treats the largest number of MS patients in Delhi. That’s what took Madhulika to him, though his treatment didn’t work well with her.
According to Dr Agarwal, India has progressed from the low-intensity to the medium intensity zone of MS. The number of MS cases coming to neurologists in India has increased in the last 10 years. Dr Agarwal alone gets three to four new MS cases every month.
“Unfortunately in India, we do not have epidemiolo-gical studies and there is limited literature from the West. In India, the number of benign cases is higher and the response to treatment is different from other countries. Patients under my observation are reacting better to treatment than patients in north European countries where the percentage of MS patients suffering from disabilities is the highest,” he tells you.
Optic neuritis, i.e. loss of vision in one or both eyes, is the most common symptom that patients come up with initially. “Everytime someone is diagnosed with MS, what follows is denial and then patients go doctor shopping, taking second opinions, which is not wrong but it leads to delay in starting the treatment,” Dr Agarwal says. Pumping in drugs like Avonex which produce interferons in the body that modify the immune system of an MS patient is the pre-requisite, he explains.
Available at almost Rs 7,000 an injection, Avonex and other medicines for MS make it a very expensive disease, unaffordable for many. The onset occurs in young adults, and it is more common in women at a ratio of 2:1. MS treatment attempts to return function after an attack, prevent new attacks and disability. The medication can have adverse effect and is poorly tolerated.
Many patients pursue alternative treatments too, despite the lack of supporting scientific study. There have been some successful cases with homeopathy, naturopathy and ayurvedic treatments.
MS is not easily diagnosed. Since it can include a broad range of symptoms, it is difficult to close in on. The initial symptoms can vary from mild to severe and can come and go with time, typically for two to five years before it can be determined if, indeed, it is MS. Before tests for MS are done, doctors usually take the multiple-query route, quizzing patients about a body of symptoms. Physical tests follow which include testing body balance, ability to stand and walk, the degree of numbness and its location, unexplained nerve pain, and whatever else appears to be amiss. Indeed, a long and uncertain procedure.
Take the case of IAF group commander Prabal Malaker who took two years to be diagnosed with MS. Posted in Udhampur in 1995, it was during one of his routine jogs that he felt exhausted. It got worse by the day and he thought it fit to start walking instead. But after two or three km, Prabal’s feet would start dragging. He was 38 years old then and 18 years into his service.
“This sudden exercise stress perplexed me. I kept trying to walk but finally decided to visit the doctor. I was not in the flying job at that time. The doctor thought something was wrong with my bones and recommended me to a surgeon. He started his treatment but I felt no pain in the bones. My weakness kept growing but trusting the doctor I carried on with the treatment for two years,” he tells you.
Gradually Prabal started finding it very difficult to walk. He was posted at Bhuj in 1998 where he had a bout of viral. "When I went to the doctor he found me dragging my foot. He sent me to a medical specialist in the Mumbai Army hospital in August who took an MRI of the spine, which came clear. Of course on hindsight, he should have done a brain MRI too. However, the doctor suspected MS and put me on steroids — a standard treatment for MS attacks. My condition only worsened and I went to a private hospital," says Prabal, trying to adjust his stiff as wood legs, sitting on a couch in his GK-II flat.
The new doctor suggested a brain MRI which Prabal didn’t go ahead with as anything to do with the brain could have caused problems at work. Fortunately, he was soon posted to Delhi, where in his physical review he was prescribed a brain MRI by the Army neurologist. The MRI revealed multiple white patches, indicating scarring of the nerves. By that time, Prabal had started experiencing spasticity of the right side of his body. Since then it has been one big slide into physical problems even though he has been on constant medication.
Having flown fighter planes, including the fastest MiG 25, it kills his family to see Prabal struggling for every step he takes. But heis not one who gave up. Prabal not only goes to swim every alternate day at the Gymkhana Club, (even though that takes everything out of him) but is also regular with the gym where he does stationary cycling and taken physiotherapy. His house is on the second floor and his bedroom on the third. He prefers to take the stairs up and down daily, dragging his legs through every step.
“One has to continue with life. People go into depression when they get to know that they have MS. They know there is no cure and it is a debilitating disease as it cripples life — you may land up in a wheel chair or get bedridden, and all this is a hope crasher. But one needs to fight it,” he insists, with example.
Prabal is also the vice-chairman of the Multiple Sclerosis Society Of India (MSSI), New Delhi. This voluntary society alone has 3,000 registered MS patients all over India.
Prabal suffers from primary progressive MS and is an inspiration for patients who lose hope. He continues to swim in winters too and has to take care that his body temperature doesn't increase because that makes it stiffer. "If I have fever I can't get out of bed for anything. I can't go out in too much heat and in all this swimming helps, though I find it very difficult to move around the entire day after a swim,” he tells you, adding how he went to the UK and France in September last year.
“I took a wheelchair there because I knew I had to walk a lot. Here I know if I have to go to the club, I need to walk so many steps, so I can hold the wall or a chair and manage,” he says.
He says he hasn’t gone to the neurologist for two-and-a-half-years because everytime something new comes up in the tests. After all, there is nothing that can cure primary progressive MS.
“The anti-spasticity drug they give me is supposed to reduce spasticity but I haven’t seen any improvement. I just take it for everyone’s satisfaction and that's about it,” he adds with a smile, trying to hide all the pain and anguish of a once active man reduced to measuring every step that he takes.
Talking to Prabal may make you feel it's all very easy to handle but reality is quite the opposite. “Only when you get something you figure out how to cope with it. One may sympathise with an MS patient but you can’t put yourself in his place,” he says.
He leads by example. One is sure Madhulika, if and whenever she gets somewhat okay, would love to do the same.
Hope floats
Rajiv Virat was diagnosed at the tender age of 17. He managed to complete his studies despite being confined to a wheelchair, went on to become three-time champion (wheelchair category) of Delhi Half Marathon and got nominated for the prestigious Wolfensohn Award for International MS person in 2005. Rajiv is also the youngest wheelchair tennis player to represent India in Malaysian Open where he won a bronze. He’s now a professional trainer in wheelchair management at spinal injuries centres in the Capital.
25-year-old Rahul was suspected to have MS at 21. As his neurologist was not entirely convinced, Rahul lived life like any other guy his age. “I smoke and drank occasionally too,” he tells you. He got the shock of his life in April 2009, when he had a relapse and underwent an MRI test which confirmed MS. Life changed completely. His family was determined to see him happy and cured of MS. His maternal uncle made him undergo naturopathy treatment under an expert. “After reading everything about MS on the Internet, I had lost hope that anything on this Earth can help. Meanwhile, I started with my Avonex treatment in July 2009. I got my next MRI done on February 18. My consulting neurologist was surprised to see the results. He called for all my reports since 2006 and compared them. He said that worst of lesions found in my April scans had reduced and many disappeared,” a happy Rahul says. Naturopathy has worked for him even though allopathy still has no answer to this crippling ailments. Rahul, all fortified with hope, is determined to continue with it along with other medication. Simply put, he is on hydro-therapy as also air, mud and sunlight treatments.
Group Captain Prabal Malaker (Retd), a fighter pilot with the Indian Air Force, and a flying instructor was diagnosed with MS in 1995. He was immediately ejected from a great career. But some years down the line, Malaker is an inspiration many MS patients would like to learn from. The fighter pilot never gave up, against all odds. He tells you how “I just don’t believe in crash landings!” As Vice-Chairperson of MSSI, he is now actively involved in advocacy and awareness drives for MS. “My struggle with MS is ongoing. But I’m not disheartened, I have to take life how it comes and my spirits remain high. I want to tell all victims — don’t give up, live life to the fullest. Things can be bad, but not as bad!” Yes, Captain!
Zarina Khatoon is a dutiful daughter, a devoted wife and a doting mother. All she ever wanted was a happy home and to care for her family. She lost her vision, hearing and mobility when she got MS. However, Zarina tries to keep up the work at home. Though she is now dependent on her children, she struggles to not be a burden on them all the time. For now, her entire family has joined in her struggle and they do their best to keep her spirits and her fight against this debilitating disease alive.