1 year old Nafisa with SMA type 1

Hello, my name is Mufaddal Adamji and I am posting this on behalf of my cousin Dr Moiz Adamji. "I am an emergency physician in Tanzania. I am reaching out to you with a heavy heart, as my 7-month-old daughter, Nafisa Moiz Adamji, is suffering from Spinal Muscular Atrophy (SMA) Type 1, a rare genetic disorder that affects her ability to move, breathe, and swallow. The only treatment for her condition is a gene therapy drug called Zolgensma, which is produced by the pharmaceutical company Novartis. Unfortunately, the cost of this life-saving medication is a staggering USD 1,800,000. (Approximately CAD 2,466,000)

As a family, we are unable to bear the financial burden alone, and we are reaching out to you for help. We understand that this is a significant amount, but any contribution, no matter how small, will make a huge difference in our daughter's life.

Nafisa is a 7-month-old child who loves to smile at anyone who plays with her. However, at 6 months, we noticed that she wasn't sitting up straight or rolling over as her elder sister did at that age. We quickly consulted with her pediatrician, who referred us to a pediatric neurologist in India. After consulting with multiple neurologists, we had Nafisa tested at the Medgenome lab, which confirmed that she is missing the smn1 gene, which will progressively give her difficulties in feeding, breathing, and walking if not treated with the costly drug called Zolgensma on time.

Your help in any way possible will be greatly appreciated. For more information, kindly check out our instagram page @smiles_for_nafisa

Thank you for taking the time to read our plea, and we hope to hear from you soon.

Sincerely,

Moiz Adamji & Family