Baby Nafisa, a precious little girl was born on September 27, 2022, only to face the harsh reality of being diagnosed with spinal muscular atrophy (SMA) Type I, an affliction that steals away muscles and strength. This cruel condition typically allows little ones like Nafisa only two years of life, as it weakens the very muscles essential for breathing.
There is hope however, in the form of Zolgensma, the ‘world’s most expensive drug,’ priced at $1.8 million. This one-off miracle drug has the potential to replace the faulty gene causing SMA, with a remarkable success rate of 91-100% event-free survival and a 66.7% effectiveness in halting the disease’s progression.
Currently, $800,000 has been generously raised, leaving a $1,000,000 gap to secure Nafisa’s chance at life. The Zahra Trust, is working tirelessly in tandem with Nafisa’s family to gather the necessary funds for this life-changing treatment. Every moment counts, and the sooner the funds are raised, the brighter the hope for a successful outcome.
The Zahra Trust has previously supported babies with the same condition. One case was the story of Baby Mahdi, a tale of triumph over adversity. His story is a testament to the incredible impact of collective support. With Allah’s (swt) guidance and the compassionate support of donors, Baby Mahdi’s treatment became a reality in October 2021, paving the way for his miraculous recovery.
Now, the plea echoes once more – for Baby Nafisa. We are reaching out once more to our generous donors, because we know that by coming together, Baby Nafisa too can have a chance at a full and joyous life.
The Zahra Trust USA is project of the Zahra Foundation LTD. The Zahra Foundation LTD is as an exempt organization as described in Section 501(C)(3) of the Internal Revenue Code