‘Fighting for Teera’: Explaining Spinal Muscular Atrophy in Kids
Teera Kamat, at all of 2 months of age, was found to have Spinal Muscular Atrophy Type 1.
Teera was a lockdown baby, born in August 2020. “She was taller than most babies, straight and long. So we named her Teera, like an arrow,” says her father Mihir Kamat.
“She was a happy child, and didn’t have any major issues other than a few breathing issues, we also noticed her arms were a bit floppy. She had a bit of a milk reflux issue and difficulties in swallowing which is normal for infants, but we took her to the doctor for a check-up. It was the worst news anyone could have gotten.”Mihir Kamat, Teera’s father
Mihir tells us that what should have been a routine check-up led to a flurry of tests before the doctors could confirm the diagnosis. “Her doctor noticed that Teera had no pushback to her shot when she was being vaccinated. Usually, children kick or react in some way, but the doctor noticed this happen over two sessions and said it might signify a neurological issue.”
They consulted with a neurologist and conducted a few more tests including genetic tests.
Mihir says, “The verdict we got was that if we don't do anything about it we would lose our daughter. There is no treatment in India, there is just an expensive option in India.”
“The news was like a hammer to our hearts. It took us a few days to register it, but we knew we had no option but to fight for our daughter.”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.
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 is focussing on fundraising for Zolgensma, a one-time gene replacement therapy, which in her current state could be a potential “cure”.
“Our brand new bundle of joy is fighting for her life. As of now, there are no treatment options available in India for this invisible killer. Our only hope for Teera to have a normal life is to be able to import Zolgensma, a one-time gene replacement therapy, which in her current state could be a potential “cure”. Zolgensma is Teera’s best shot at quality life, and not just an extended life span.”Mihir Kamat
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!”
To help raise funds and ensure Teera gets a fighting chance against SMA, donate to her fundraiser here.
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