Spinal muscular atrophy: Parents hope to crowdfund surgery for baby boy
Calcutta-based Das family is raising funds through the crowdfunding platform ImpactGuru.com for their 4-month-old son Ayush Das who is suffering from SMA Type 1 (Spinal Muscular Atrophy).
He is fighting against this deadly disease which is affecting him from doing basic activities like moving, eating, breathing, and swallowing and is also slowly corrupting his muscles. Ayush is currently raising funds of Rs 16 crores through the crowdfunding platform for his Zolgensma therapy. So far, Aayush’s ImpactGuru fundraiser has raised over Rs 5 lakhs in the span of seven days.
Aayush’s father, Arpon Das is a government job employee while his wife is also working professionally in a private company. Ayush’s parents are trying their best to save his life by giving him the complete and best treatment. However, the huge amount of Rs 16 Crores stands as the biggest obstacle in their endless efforts. Seeing little Ayush suffer from this deadly disease every second, breaks the heart of his family. Currently, he is in a very critical condition and undergoing treatment at Peerless Hospital, Calcutta.
"We are on a mission to give my baby a normal and healthy life which could be achieved with the life-saving drug Zolgensma, a gene therapy medicine for treating spinal muscular atrophy. Ayush has been a strong warrior so far and has survived all the pain that life throws at him. However, as parents it is like walking on shattered pieces of glasses every day while we see our little one suffer,” says Arpon, Ayush’s father.
SMA is a progressive neuromuscular disease caused due to defects in the SMN1 gene. The affected children develop muscle weakness involving upper and lower limbs initially, but over time they develop breathing and swallowing difficulty. SMA affects 1 in 10,000 children generally, and there are nearly 800 children suffering from SMA in India currently, and thrice as many children die before they even reach their 2nd birthday.
The best treatment available for SMA is Zolgensma, an American gene therapy replacement drug, carrying a duplicate copy of SMN1 protein. One shot of Zolgensma infused in the vein of a child below 2 years of age has the potential to stop the rapid clock of muscle atrophy (weakening and shrinking) in the body and restore the lost functions over time.
“My little angel and all my hopes are now in your hands. We desperately need your help to save my child. He is too small to be facing the challenges of this lethal disease and my heart is shattering by realizing the failure of not being able to afford the treatment. For you, it will be a donation but for Ayush, it will be a rebirth. Even the tiniest of your contributions through the ImpactGuru platform can immensely help us.” appeals Arpon.
Fundraiser Link: https://www.impactguru.com/fundraiser/support-baby-ayush