When Shital Bhatkar lost her young son to a rare disease, it changed not just her life but also the life of a lot of other people. Shital’s story, in her own words…
The most unbearable fate that can befall a parent is that of losing their child. And the only way it can become bearable, in a small measure, is by helping to lessen the pain of others.
It began well, though.
When I held my beautiful baby boy in my arms, I felt contented. “Our family is now complete,” I said to my husband and my 5-year-old daughter as they stood around my bed at the maternity hospital.
Things were going well till Aarya, our son, was already one and half years old and not yet walking (a growth milestone which is generally achieved at one year). His tummy too seemed swollen.
A Rare Disorder
The paediatrician didn’t have much to say but referred me to a neurologist, Dr. Udani, who took one look at Aarya and said he suspected a storage disorder. This was a term we were hearing for the very first time in our lives. We did the tests suggested by the doctor but they only diagnosed Aarya as being anaemic. We heaved a sigh of relief. A few months later, he was admitted to hospital with typhoid. Dr. Udani was one of the doctors allocated to him and when he saw Aarya, he prescribed a bone marrow test. We got it done once Aarya was better.
The results confirmed that it was a storage disorder disease.
This is a rare, genetic disease in which one enzyme is missing and so the fat cells are not synthesized. They end up accumulating in the vital organs like liver, spleen, lungs, bone marrow and brain and can be fatal. This affects 1 in 100,000 people and around 500 cases have been diagnosed worldwide.
I had completely blanked out as the doctor explained this disease to us.
On the doctors’ advice we sent a skin sample to the world’s only NPC testing center that is in Netherlands. It took so long to reach that it got spoiled in transit. The result of the second sample confirmed it was storage disorder. And worse, it was the Niemann Pick C (NPC) type, which has no cure. The life-span of a child afflicted with NPC was not more than 6-7 years.
A Ray of Hope
This was earth-shattering for us. But we did not want to give in so easily. We showed him to many doctors and pursued many alternative therapies: homeopathy, ayurvedic, flower therapy. Nothing worked. We combed the internet for sources and information. One such search led us to a Switzerland company which manufactured capsules that were supposed to be a cure.
They were extremely expensive: Rs.5 lakh for 90 tablets. The company would give the medicines only to a hospital or pharmacy. We requested a pharmacist friend to help out. There were excise and import hassles too. But finally we got the capsules but nobody could tell us about the correct dosage. None of the doctors we spoke to had even heard of this disease. We were stuck.
Luckily, we connected to the doctor who was the inventor of the medicine and he began to guide us for the dosage. It was very bitter and I had to stop giving Aarya milk, sugar and such stuff for the medicine to have full effect.
Aarya was a foodie. Not letting him have cake and other sweets at birthday parties used to be heart-wrenching. But I persisted. Getting him to become well was the only goal in my mind.
At the end of six months of giving this medicine we saw there was absolutely no improvement in his condition.
If the medicine had worked we would have somehow managed to rustle up the resources to continue them. But with no results at all, we decided to stop the medicines.
In the meantime, Aarya’s limbs began turning. He began having difficulty in swallowing. We knew the deterioration had started and it was going to be rapid. He began having a lot of congestion in the lungs. By the time he was 3 he was completely bed-ridden. We were feeding him through a stomach peg and every few hours we had to suction out the congestion in the lungs. An oximeter attached to his forefinger became our lifeline as well as his. Oxygen had to be constantly supplied to the lungs and this oximeter told us if the oxygen levels were normal.
I was the primary caregiver. Though my husband took over Aarya’s care for 3-4 hours in the night, he had to go to work and the entire onus of taking care during the day was on me.
The pain of helplessness was taking its toll. That one could do NOTHING at all was always gnawing at my heart. I often felt my head would burst. I needed some time out and looked forward to visits from friends and family. My mother often chipped in to help with my daughter, which was a huge blessing.
But some visitors would say this was happening because of Karma: apparently because of a wrong Aarya or we might have done in previous lifetimes. And here was this child, a pure soul, lying helpless.
It got too much to bear. I stopped allowing such toxicity to come into our life.
Meditation came to my rescue. This gave me the strength to carry on and not go into depression. Even today I ask the question “Why”. When I think of God I can still see Aarya, my little baby and the injustice of it all still hurts me. Hopefully meditation will help me to come to terms with it.
Towards the end, when Aarya was just three months away from his 7th birthday, the oximeter readings began getting lower and lower. This was a sign that he was struggling but we could do nothing at all to help him. With monetary and other resources available to us, even then we were helpless. We admitted him to the ICU but we decided to be with him instead of leaving him alone inside the ICU. We shifted him to the room and we were with our Aarya when he passed on an hour later.
For me it was as if I was thrown into a void. For almost two weeks I could not come to grips with the loss. My husband and my daughter had been equal partners in facing this journey of pain together. The bond between my husband and me had strengthened through this adversity. My daughter had matured almost overnight over the five and half years of Aarya’s condition. But they needed me and I had to overcome my grief.
WithAarya – The NGO
Aarya had come to be known as the NPC child. All doctors began referring their NPC patients to us. When Aarya was four we began an NGO ‘WithAarya’ to help the ‘NPC families’. Most were from low income groups and often multiple kids in the family were afflicted. This caused a huge strain on their finances and they could not provide proper care. As the disease progresses, the amount of care required becomes very intense. We helped, as much as we could, with information and support. Going back after Aarya was almost traumatic and my husband told me to stop going to the hospital. But I knew I had to go back and help them. This is what helped me come out of the pain of losing Aarya.
I would visit the KEM hospital very often since it the only hospital in India where all genetic disorders are treated. Many of the patients and their attendants were from out of town. I would often see them sitting outside in the corridors or on the road, hungry, not able to afford even a single meal in the day. There was a tribal child who had been admitted for a heart illness. But he was so malnourished that it was unbearable to see his condition.
With my husband’s encouragement, I started distributing food packets at lunchtime to those in need. This is how Don Ghaas (Marathi word for Meal) came into being. Each packet contains roti-sabji, dal-khichdi and a banana for Rs.10/- each. We began with 50 packets and today we are distributing 250 packets, 100 at lunch and 150 at dinner.
Besides this, we also help with medical aid in terms of medicines and getting prescribed tests done, including CT Scan, MRI and so on.
In truth, it is doing this work that has stopped me from going into depression after losing Aarya. Many people have come forward to help us with this initiative and we hope we can continue to make a difference as much as possible. Through our association with Organisation For Rare Diseases India (ORDI) we are also trying to get the Government involved in a larger way.
A Message of Service and Hope
Aarya will never come back. But his short journey with us has so much more sensitive to what is going on around us. People feel that they will get depressed if they help those in hospitals. Even for me, going back to these hospitals after Aarya was initially traumatic and my husband requested me to stop. But I knew I had to go back and help others. And helping others is what helped me come out of the pain of losing Aarya.
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