Mumbai: The Mumbai based couple, Priyanka and Mihir Kamat have arranged Rs 16 crore to cover the cost of Zolgensma therapy as their 3-month-old baby Teera is diagnosed with Spinal Muscular Atrophy (SMA) Type 1. The couple has raised the amount through crowdfunding.
What happened to Teera?
Priyanka and Mihir hailing from Andheri gave birth to a baby girl on August 14, 2020. Baby Teera started having trouble drinking milk after two weeks. After seeing her condition, she was immediately taken to a paediatrician.
After a round of tests, she was finally diagnosed with Spinal Muscular Atrophy (SMA) on October 24. The medicine for this disease is an injection of gene therapy. whose price is very high, about Rs 16 crores.
As the disease is rare, not much information on it was available in the country. However, the couple soon realized that they could get expensive drugs from a US pharma company. The cost of injections required for this treatment is Rs 16 crore. The crowdfunding option was chosen to raise the amount as it was large. The amount was received within a few months due to the will of Teera's parents. However, another problem they are facing now is that they will have to pay Rs 2 to 5 crore as import duty to bring the drug to India.
What is Spinal Muscular Atrophy?
SMA is a rare genetic disease that attacks the baby's nerves and muscles, and as it progresses, makes it extremely difficult for the child to carry out basic activities like sit up, lift their head, swallow milk, and even breathe. SMA is currently the leading genetic cause of infant death worldwide, and it affects 1 in 10,000 babies.
Although the drugs were expensive, Teera's parents were able to raise large sums of money because of their strong willpower. With the help of doctors, the couple managed to raise Rs 16 crore through crowdfunding. Crowdfunding is an alternative method of raising funds online for medical expenses, with the patient (or his/her friends or family) primarily relying on social media networks to mobilize donors to finance the relevant medical bills.
Although everyone considers social media to be part of the entertainment, the benefits of media seem to be for the better. The Kamats raised Rs 16 crore through social media and some medical aid organizations. However, will there be any help in import duty on medicines now? For this, the Kamat couple has started a correspondence with the Central Government. Letters have been sent to the Prime Minister's Office, Chief Minister Uddhav Thackeray and Union Minister Nitin Gadkari.
Teera will go home in a few days
Teera is currently on a ventilator. She is doing much better now The disease is making it difficult for her to breathe. A tube has been inserted into her stomach to eat. We will discharge her in a few days. However, they will have to take a ventilator while they take her home, said pediatric neurologist Anahita Hegde who has been treating Teera.
