Nafisa, a 7-month-old girl living in Dar es Salaam, Tanzania, has been diagnosed with type 1 spinal muscular atrophy.

This is a rare degenerative disease that affects 1 in 10,000 births worldwide. It leads to the progressive destruction of nerve cells originating from the spinal cord, resulting in paralysis of all muscles in the body and difficulties in performing vital functions such as standing, swallowing, digesting, sitting, and breathing.

The prognosis for this disease is very poor, with affected children generally not surviving beyond 2 years of age.

There is one ray of hope in the form of gene therapy called Zolgensma, but the cost of this treatment amounts to 1.9 million euros.

Needless to say, this treatment is inaccessible to the average person.

Through this fundraiser, we, the close ones of little Nafisa, hope to raise the necessary funds for her to receive this treatment.

We have also made significant progress in our fundraising efforts. So far, we have raised $4,630,000 USD. This is an incredible achievement, and we are grateful for the support and generosity shown by so many people.

In addition to our fundraising, we are actively engaged in discussions with the pharmaceutical company, Novartis, in the hope of finding a solution to the high cost of the treatment. We are exploring the possibility of negotiating a reduced price or establishing an installment plan that would make it more feasible for us to afford the treatment for Nafisa.

We remain optimistic and committed to doing everything in our power to provide Nafisa with the best possible chance at a healthy and fulfilling life. We are deeply touched by the outpouring of support we have received thus far, and we continue to call upon the kindness and compassion of individuals and communities around the world.

We therefore appeal to your generosity or your networks to help share this message with as many people as possible.

Thank you ❤️