An Appeal from Mr. Debashish Ghosh, AIGETOA Member, SDE Kolkata TD

Children. Just reminiscence of this word brings to our minds the vivid picture of super-active, playful nature of the most beautiful gifts in this creation. But Alas ! There are unlucky few who are deprived of this basic capability of doing normal activities on their own.

Debosmita Ghosh, 12-year-old girl, is one such child who is wheel chair bound and does not have the ability to move her arms and legs due to a rare neuromuscular disease classified as Spinal muscular atrophy (SPA). In this disease, nerves of the anterior horn cells of the spinal cord degenerate leading to gross hypotonia and muscle wasting. This weakness in the muscles throughout the body arises various complications such as knee knocking, bending of spine, osteoporosis to name a few. Some of the problems have been overcome by undergoing scoliosis correction surgery for her spine, zoledronate infusion for maintaining bone density, Bipap support for regular sleep etc. Despite all the efforts, she is having 80% locomotor disability. Naturally, she is fully dependent on all activities of daily living including eating, dressing and basic hygiene.

Despite all this crippling circumstances, she is brilliant in her academics. She is class topper and won accolades in many Olympiad exams and abacus competitions. Also, she is a talented singer, good in elocution, story-telling and creative writing. She dreams to become a teacher or an astronomer.

Currently, her condition has been progressively deteriorating. Only proper medical intervention has the ability to not only delay the disease progression but at times, effect mild improvements.

Only drug that can stop progression of her disease and help regaining milestone is Risdipalm. She is receiving this drug from last two years under a compassionate use program by the drug manufacturing company. Being on treatment has helped her to have few improvements in motor activities. However, this program of Risdipalm will end by 2023. Stoppage of this drug may deteriorate her condition and push her health and life to uncertainty. Presently, she is under Dr Sanjukta De of Peerless Hospital, Kolkata.

Risdipalm is a DCGI approved only drug commercially available India. But, the drug, costing Rs 72 Lacs per year, is exorbitantly high and beyond the affordability of her parents Mr. Debashish Ghosh, an AIGETOA member with Kolkata TD and Mrs. Moumita Ghosh, an optometrist.

In order to support her for at least 15 years, we are compelled to raise at least Rs. 10 Cr through crowd funding platform It may be noted that the donor will be eligible to receive tax benefit for 100% of the contributed amount under section 80G of Income Tax Act of India.

We are hoping with in this period, Government of India will come up with some solution to continue treatment support to our only child. We are continuing to appeal to Government of India as well. Therefore, we appeal to all to help in this enormous task by making contribution as per own convenience such that our child has fair opportunity to realize her dreams.

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