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Feb 12 - Alpana Sharma

#FebRAREuary spotlights a #RareMother

SMA is a rare disease found in an estimated 1 in every 6,000-10,000 people. It is a progressive genetic disorder that affects the motor nerve cells in the spinal cord and leads to progressive muscle wasting (atrophy) and mobility impairment. It is the number one genetic cause of death for infants.

Alpana Sharma recounts her child’s journey with SMA. “When Aarav was about 14 months, we felt his muscles were becoming floppy. He was not able to hold his body together. His neck would roll back or forward. His limbs would be loose and droopy. We started with a calcium deficiency and other routine blood tests, but everything came normal. We took him to several neurologists, but nothing was detected.

When Aarav tested positive for SMA, we were shell-shocked and numb. The more we learnt about the disease, the more our world crumbled. Grief and tears began to choke me. My head would pound, throb with questions. Why me? Why my child? Cursing myself!

Unfortunately, in India most doctors consider SMA a death sentence. All they can advise for type 2 is ‘go, love your child’ as they cannot live beyond 10 years. There is no hope, no quality of life for them.

My brother, who stays in California, told us about a conference being held there on SMA and coaxed us to attend. It was the annual conference of ‘Cure SMA’, the largest SMA conference in the world attended by doctors, scientists, researchers, affected families and communities. So, we went for the conference. At the conference, we met many Type 2 children and realized that with proper medical interventions, physiotherapy, and diet, they can also live. A person who left a deep impact on me was one of the organizing committee members, Sierra Kulas. She is a mother of 3 children, two of whom are SMA type 2. She was an amazing lady, so strong to see beyond her pain to move ahead and do something worthwhile. It was really morale boosting.

My message to fellow rare disease patients is to focus on abilities of your child.”

#RareWomen #SpinalMuscularaTrophy #RareDiseases #Motherhood


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