In some happy news, Teera Kamat, a 6-month-old infant with a rare and life-threatening genetic disorder is one step closer to a cure. “We have no words to describe the gratitude we feel towards your compassion & commitment towards our little one,” says her father Mihir Kamat.
The Good News
Earlier FIT reported on her condition - Spinal Muscular Atrophy Type 1 - and the exorbitant rates for her life-saving treatment, Zolgensma, a one-time gene replacement therapy, which in her current state could be a potential “cure”.
Teera’s parents had set up a fundraiser for a whopping 16 crore to pay for her Zolgensma treatment. The good news? They raised the money and then some.
“From our fundraiser and everything else we raised about 16.5 crores. We stopped once we had enough.”Mihir Kamat, Teera’s father
But the journey was't over yet. Besides the 16 crore for the treatment, there was an import tax (GST and customs duty) of 6 crore on the medicine that was coming from the US. But in another miracle for the family, the government decided to waive off the tax in a humanitarian move. Mihir and wife Priyanka had appealed to PM Modi in October 2020 and even in January, and finally got the answer they wanted. “Many of our well-wishers had some connections in government, so they helped us send letters out to key stakeholder, including the Maharashtra CMO and Devendraji (former Maharashtra CM Devendra Fadnavis),” adds Mihir.
On their Instagram page, they added, “The Min. of Finance, Dept. of Revenue issued an ad-hoc exemption order on behalf of Teera to direct the dept. of customs to grant a customs duty & GST waiver on the import of Zolgensma. Concurrently, the Health Commissionerate of the state of Maharashtra issued certificates for custom duty & GST waiver.”
While one applauds the government’s gesture, it is important to question the need for such a high tax on life-saving treatment. Life-saving medication should be accessible, but a Rs 6 crore customs duty makes this impossible for other families who may not be as lucky to get an exemption.
1 Lakh Plus Donors!
“Thanks 1L+ donors who made this conversation even possible. Your love for Teera is why we wake up everyday to fight.”Mihir Kamat, Teera’s father
In three months since Mihir posted an emotional appeal on crowdfunding platform ImpactGuru in November 2020, their dream came true in February 2021. Donations poured in from more than 1 lakh people pan India and the rest of the world in what has become one of the largest medical crowdfunding success stories.
Comments on their Instagram page are flooded with well-wishers who have either donated or are praying for Teera’s recovery. One commenter goes on to say Teera “Seems like she is the whole nation's daughter now and not just yours.”
The next step is a waiting game says Mihir. “So we have initiated the payment for Zolgensma on 13 February and are waiting for the payment to reach the pharma company. It was done in multiple transactions because the amount was so large. Once we know that everything is in order, the medicine will ship to Mumbai. Shipment and customs is expected to take at least a week, if not more. We don’t exactly know how long it will take.”
For now he says they are taking care of Teera’s condition at home, “She is being regularly fed through her feeding tube, and needs airway suctioning every 4 hours. So far she is stable connected to her portable ventilator, and we are keeping her strength up with regular physiotherapy. Right now we are in wait for a word on the medicine.”
“She has started to enjoy Kishore Kumar songs, and many an evening is incomplete without them. You can see her tapping her little hand as she follows along to its rhythm, as if to perform a dance number. We hope to see her dance circles around us as she grows into a beautiful, kind youngster.”Mihir Kamat, Teera’s father
What is SMA?
Spinal muscular atrophy (SMA) is a group of genetic diseases that cause weakness and wasting in the voluntary muscles of infants and children, and rarely in adults as well, according to Cleveland Clinic.
So when your child has SMA, they find it difficult to use their muscles. WebMD explains that there is a “breakdown of the nerve cells in the brain and spinal cord,” so basically the brain stops sending messages for muscle movement.
When Teera turned 2 months old in July 2020, her parents noticed her troubles in lifting her head and choking on her milk.
Mihir says that doctors told them to pay special attention to Teera’s breathing and nutrition. “Those were the care factors, we have to be careful to ensure she doesn't get any infection, her nasal passage is clear.”
As the disease progresses, the child’s muscles get weaker and shrink and this could lead to problems in sitting without help or controlling head movements and even walking. Later children can develop trouble swallowing and breathing in more severe cases. There are five different types of SMA with varying symptoms:
- Type 0: The rarest and most severe form, this develops while the mother is pregnant. Babies often moe less inside the womb and are born with “joint problems, weak muscle tone, and weak muscles for breathing,” reports WebMD. Their breathing problems often make it hard for them to survive.
- Type 1: This is also severe and the child may need help supporting their head and sitting. They may have floppy limbs and issues with swallowing. The biggest issue here is a weakness in the muscles that control breathing.
- Type 2: Seen in children of 6-18 months. They have moderate to severe symptoms. Here the child may be able to independently sit and walk or stand. This is called chronic infantile SMA.
- Type 3: This usually occurs in children between 2-17 years. It’s the mildest form of the disease and here the child can independently walk, sit, stand but may face issues in running or climbing stairs. They may need a wheelchair as they age. This is also called Kugelberg-Welander disease or juvenile SMA.
- Type 4: This is seen in adults. The symptoms include muscle weakness, twitching, or breathing problems. Usually, only your upper arms and legs are affected. These are lifelong symptoms but may get better with exercise and physiotherapy.
Teera has Type 1, and while there is no cure for SMA, there are a few treatment options and therapies like physiotherapy that can help. Her family was focussing on fundraising for Zolgensma, a one-time gene replacement therapy, which in her current state could be a potential “cure”.
Causes and Management of SMA
SMA is a reccessive genetic disease, due to two copies of a broken gene - one from each parent. What happens is that the child body is unable to make a specific type of protein, reports WebMD, and without this protein, the cells that control muscles die out.
What is only one faulty gene is passed down from one parent? Then the child won’t have SMA but will be a carrier of the disease and could pass the broken gene to their offsprings.
Mihir says that they are managing Teera’s disease through physiotherapy for now, and looking at her even more carefully. COVID has certainly complicated the situation, but they remain hopeful as their daughter is only 4 months old.
Mihir has been actively fundraising and adds that, “No one in their right minds tries to raise 16 crores over the internet. But we are, and because of your support. Teera is on a clock and every second counts, every donation counts, every share counts!” And it has worked for them.
(At The Quint, we are answerable only to our audience. Play an active role in shaping our journalism by becoming a member. Because the truth is worth it.)