Ayaansh a 2.5 years old boy needs Rs.16 crores to save his live. Sounds unbelievable, but the medicine available as a cure for a Rare Disease SMA ( spinal muscular atrophy) is one of the most expensive medicine globally; it costs 2.1 million US dollars, about Rs 15.50 crore.
The parents of the boy decided to not give up their fight to save their child’s life. They have started a Crowd funding campaign to raise this amount. The response though good so far has not helped the parents to achieve the target amount.
Sharing the article / story – as received from the parents.
** Disclaimer – Possiabilities is not involved in the Fund Raising Campaign in any manner. The article / story is based on inputs received from the parents. Details of the campaign are included in the article, and readers are requested to contact directly.**
Ayaansh Gupta, a little warrior battling a deadly and rare disease, Spinal Muscular Atrophy (SMA).
“ Ayaansh was born on 27 May 2018 in Hyderabad. Like any other parents, we were very happy. He was our first child, our first step to parenthood. We felt so blessed. “I always knew I will have a boy although I was secretly hoping it would be a girl. Boy or girI, I know I am going to love him/her so much, pamper him so much and make him/her a perfect human being. And here he was, very small, tiny, I was able to hold him in my palm. He was sleeping on my chest, I couldn’t believe myself that I was a father.” – Yogesh
He was sharp and cheerful. He was smiling on the very second day of his birth. In fact, he started saying proper words in 6-7 months and proper sentences in 14-15 months. He had memorized many rhymes and mantras at the age of 17-18 months. “ the entire 9 months of pregnancy was very normal, no issues, no problems. We were so happy that everything was going fine. Never knew that it was peace before such a big problem” – Rupal
But we knew from the very start that there is some problem. We could not connect all dots until diagnosis. We used to discuss things about his development with our Paediatrician and he used to say – ‘Every child has its own pace of growth. Give him some time he will be all fine.’
He used to have some problem during feeding. It lasted only for a few seconds. Later, we could connect that it was because his swallow muscles were weak due to the disease. Even now, he cannot eat solid food. He cannot chew. He faces difficult with swallowing. We have to be very careful with the texture and consistency of the food. Even a slight change and he can vomit it all out. Since he cannot eat properly, his weight has always been on the lower side. He is already 2 years and 9 months but only 10.5 KG, way lower than a normal child of this age bracket.
Well! What if he can’t eat? He loves to say what he wants to eat! He started liking plum. That was his favourite. He used to suck it a little when he was young. Then, he started liking cakes and chocolates. Grapes are the latest addition to this list. If he sees grapes, he will have it no matter what. We try to peel it and mesh it before we put it in his mouth. Still many a times it gets stuck, he chokes and vomits. Then for few days, he says “I don’t want to eat this, I will vomit.” We do cry every time he says things like this.
Although, he can’t eat cakes, he loves to bake. I guess he caught it from the bakers’ song he watches on YouTube. He loves to bake the cake by doing some kind of movement with bowl. We love to watch him do that. We can’t see him do lot of things like playing and running here and there. So, I guess this is a big thing for us. Time was passing by and tension was increasing. Why is he not doing anything? Our family got worried. Neighbours showed concern. We waited till 8 months for him to do something but nothing happened. The only milestone he ever achieved was neck control and he lost that too around eight months. It was then that we panicked. We visited Rainbow Children’s Hospital in Hyderabad for expert opinion. We were advised for developmental assessment and it turned out that he was behaving /moving only half his age. The doctor was very concerned. He referred us to a Neurologist. We never knew that this was just the beginning and after this, we would be meeting so many experts – Neurologist, Pulmonologist, Gastroenterologist, Orthopedician, PT, OT Dietician, Speech therapist and so on. God knows how many more we will still have to meet.
SMA is a neuro-muscular disorder which requires multi disciplinary management.
The Neurologist suggested NCS test in which electricity is flown through the body. The flow is monitored while it passes through all the limbs and is done when kids are sleeping so that they don’t face any discomfort. Ayaansh slept for some time. When he woke up, he did cry a little bit but we were more worried to see the concern on the face of the lab attendant.
When report came, the doctor was worried. He told us about SMA and said that we need to do a lab test. He asked us to pray to the GOD that Ayaansh may not have SMA. That’s when we heard the word ‘SMA’ for the first time. It took three weeks for the report to come.‘Intensive web search started about SMA and I couldn’t believe the things I was reading. All symptoms were matching exactly. Report didn’t come yet but I knew my bundle of joy has SMA.’ – Rupal.
Well! Heart takes time to accept what mind knows already. Report came and it was SMA. Doctor said that with his condition and as per the Indian standards, he may have life of 3-4 years. We looked at Ayaansh and we burst into tears. He told us about the medicines and the new developments happening across the world. He told us about the cost!!! Yes the COST!! We were crying and he tried to show us some light, some hope so that we could see it and fight it. And yes! He did succeed; we got to know that there is some medicine and that we have to get it for Ayaansh. While we were still in a devastated state of mind unable to accept our bad luck, the doctor also told us about disease management. The importance of PT and OT in the management of such a disease was informed to us. – Rupal
Rupal had to quit her job as there was no chance to leave Ayaansh like this and work. He needed 24*7 support. He was already deteriorating; he had lost his neck control.
Rupal – ” That whole year we were waiting for some milestone’ achievements but none of them were achieved by Ayaansh. He never rolled over till six months. We celebrated his half-yearly birthday in expectation that he will do it later. He grew older but he never crawled. He never tried to move his body. To stand was an impossible thing. He was unable to chew or eat anything. We visited the doctors multiple times but they told that it’s developmental delay. We still decided to host and celebrate a small one year birthday party for Ayaansh.
After completion of a year, he was still bedridden. He would only sit with support. (No self sitting). There were other one year old babies in our neighbourhood. All were able to stand and eat cake but Ayaansh was not. I was afraid and devastated that only my son was unable to do all this.
My days were stressful and nights were sleepless because people started pointing every time I met or spoke to someone that Ayaansh was not doing anything. It was very painful to hear these words. Luckily, we reached the right place and the doctor decided to go for a Genetic test. We did all the tests and came home. Reports were about to come after a month.
That one month was the worst month of my life. We started understanding his symptoms which indicated a neuro-muscular disorder. We started wondering and worrying if he is a rare disease’ kid, who may not survive beyond 2-4 years. On 4th June, his report came and yes it was SMA. We heard it for the first time and we both started crying in front of the doctor. Very patiently, he explained us everything about this disease.
We were broken. We were shattered. We used to cry whenever Ayaansh slept. But when he was awake, we were on a mission to keep his body supple, his limbs active so that he would survive till the time we could arrange for his medicine.
After diagnosis, began the journey of disease management for being an SMA family. We knew we may have just few years to spend but we couldn’t give up on our darling boy. He was fighting, so did we.
We learnt about physiotherapy. We bought toys but we also bought physiotherapy equipments. We bought toy cars but also braces, KFOs, AFOs, SPIOs and Walker. We joined many online physiotherapy classes because that is the only thing which can slow Ayaansh’s deterioration. We tried to keep him at home as his immune system is weak. Any flu meant 2 to 3 weeks of hospital rounds for suction. (He cannot cough and hence the phlegm has to be sucked out using a machine, else it could be fatal).
At present, he has all physiotherapy and support equipments (round ball, peanut ball, SPIO, boston braces, AFO, KFO, Night split, Elbow braces, standing frame etc). His room which was supposed be full of toys and his smiling photos is filled with these equipment.
Well! It is SMA. You can fight it but you can’t win. Deterioration is fast now. You can easily see his abnormal under-developed chest, his dropping hands, etc.
Physiotherapy has become intense. Now, the only thing that he does apart from lengthy and tough meal sessions and sleeping is physiotherapy. If you ask him what he wants to do now, he will say “Let’s do stretching” or “Let’s do bridging” – all about physiotherapy and nothing else.
If he gets cough and cold, his chest gets congested and chance of Aspirational pneumonia increase. We have taken him to hospital for manual suction even twice a day to save his lungs. It is a very painful process where a catheter is put inside the chest through mouth and phlegm is sucked out. He used to cry, cry a lot but pain is going to be a companion. He needs to make pain his friend.
Meanwhile, we started trying various things. We were exploring the possibility of moving to other country and to get registered in any trial program. We even tried other branches of medicine like Ayurveda but all odds were against us. We did not get any success.
In January’20, we heard about Novartis’ Zolgensma program. We then thought that Ayaansh would get the medicine. But life has stopped being easy on us. Ayaansh never got picked for it. When Ayaansh turned two, we got a mail from Novartis stating that he won’t be eligible for the program anymore. Our option of moving to another country for Ayaansh’ treatment also got closed due to Corona.
Crowd funding was only option left and it is the last resort for us. It is a big task and requires a lot of effort not from one family but from a big supporter base. We are trying a lot of things but time is clicking fast. We don’t know if we will be able to get the medicine for Ayaansh. We don’t know if we will be able to save him. But we do hope every second to give him the best of this world. We are not sure of how long he will be with us. This is not a life I wanted to give to my child. Seeing Ayaansh like this kills me every day, every second.
To talk about the Crowd-funding Campaign, we were able to raise our first Cr. in only six days and second in the next eight days but it got very slow after that. The fund flow has not ebbed. We need some boost here; unfortunately it is not coming easily. We are reaching out to celebrities, many are talking about Ayaansh but it is not converting into donation.
Manoj Bajpai, Anurag Basu, Jaaved Jafrei, R. Ashwin, DK and Washington Sundar to name some, have supported Ayaansh.
Ayaansh has been covered by various media houses, CNBC, News 18, Zee News, TOI, Telegraph, Bangalore Mirror etc.
Ayaansh’s pain also echoed in the Upper House of the Parliament of our country but donations are still low. We really don’t know what we can do to get that magical injection for my son. Please Help!
We need this story to go to masses. Else it will be difficult to raise the remaining amount.
The Link for Donations – https://www.impactguru.com/fundraiser/donate-to-ayaansh-gupta
The Link to various articles and news regarding Donate to Ayaansh – https://linktr.ee/DonatetoAyaansh
Please share the links for Donations