In India, one in 40 people carry the gene for Spinal Muscular Atrophy.
If both parents carry the gene, then there is a 25 percent chance that the child may have Spinal Muscular Atrophy (SMA). Five weeks after pregnancy, a prenatal scan can be done to determine if the fetus would have SMA.
Aarav is five years old and received a diagnosis of SMA Type II at the age of one.
This genetic disease causes advanced muscle weakness. Thus, it affects Aarav’s ability to stand, walk, or sit. He wears a body brace to help support the spinal cord. The crutch-brace goes from his neck to toes. Also, it helps him keep his balance.
Aarav’s mother, Alpana, stated that they try to give him treatments to help with muscle building. Additionally, she says that for people with type II, lifespan depends on the type of care they are receiving.
Alpana believes the lack of awareness in India is worse than the lack of treatment.
From her experience, doctors in her country have an insensitive attitude towards SMA. Shockingly, one top neurologist asked her why would she would even try investing in her son, since he has a progressive disease. Most doctors have told Alpana that the only things to give children with SMA are love and care.
Alpana did research on her own. She found there were not any support groups or databases on SMA in India. But, she did come upon an Organization for Rare Diseases for her country. They helped her set up an NGO called “Families of Spinal Muscular Atrophy India.”
Alpana is doing all she can to raise awareness. She hopes that treatment will be available soon in India.
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