New Delhi:The parents of nine-month-old Aditi Nilani, who has been diagnosed with the rare and severe genetic disorder Spinal Muscular Atrophy (SMA) Type 2, are making urgent efforts to raise ₹16 crore for her treatment.
Aditi requires a gene therapy drug, which has to be imported from abroad, at an estimated cost of ₹16 crore. Several organisations have joined the family in their efforts to raise the funds needed for the treatment.
According to Aditi’s mother, Shobana, who is based in Delhi, her daughter is battling SMA Type 2, a serious genetic neuromuscular disorder that affects muscle strength and physical movement.
Aditi requires immediate specialised medical care. Doctors at the All India Institute of Medical Sciences (AIIMS), New Delhi, have examined her condition and recommended that she undergo gene therapy urgently. The doctors have indicated that gene therapy could help prevent further deterioration of her condition and potentially improve her health.
However, the cost of the drug required for the gene therapy is around ₹16 crore, which is beyond the family’s financial means. The parents have therefore appealed to various individuals and organisations for financial assistance to save their daughter.
What is Spinal Muscular Atrophy?
Spinal Muscular Atrophy is a genetic disorder in which the nerves in the spinal cord are progressively affected, reducing the nerve signals reaching the muscles and impairing their functioning.
Children affected by SMA Type 2 may be able to sit with assistance but may be unable to stand or walk independently. As the condition progresses, they may also develop difficulties with breathing.
Since the disease can progressively affect the child’s muscles, the parents have appealed for financial assistance so that the gene therapy can be administered before Aditi’s condition deteriorates further.
What do AIIMS doctors say about Aditi?
According to the medical genetic report cited in the case, nine-month-old Aditi Nilani has been diagnosed with SMA due to a homozygous deletion of exons 7 and 8 in the SMN1 gene.
Aditi is currently able to sit with assistance, and the medical genetic findings are consistent with a diagnosis of SMA Type 2. The report indicates that she may acquire the ability to sit independently over the coming months; however, she may remain unable to stand or walk.
Children with this condition can also experience difficulties with feeding and may develop respiratory complications.
The report further notes that the US Food and Drug Administration (FDA) has approved onasemnogene abeparvovec-xioi (Zolgensma) for the treatment of SMA.
An Appeal for Aditi
Aditi’s family is making an urgent appeal to people from all walks of life to come forward and support her treatment in whatever way they can. Even a small contribution, when combined with the support of many people, can bring the family closer to the ₹16-crore treatment target.
Those who may not be in a position to contribute financially can still make a difference by sharing Aditi’s story and spreading the word among their friends, family, social-media networks, organisations and communities.
At a time when every moment matters, collective compassion can give a child a chance at life. One small effort from each of us can become a lifesaving effort for someone else. If we cannot do everything, we can still do something—and sometimes, that one small effort can save a life.
How to Contribute
Bank details shown in the fundraising material provided for Aditi Nilani:
Branch Name: Vazhudhared(d)y
Account Name: Einstein Charles
Account Number: 23490100080841
IFSC: FDRL0002349
MICR Code: 605049006
SWIFT Code: FDRLINB8IBD
Note: The bank details above have been transcribed from the fundraising image supplied for inclusion in this article and have not been independently verified.
