Help Baby Kiama Get Zolgensma,to beat SMA type 1

We are a Kenyan family -comprising of Bernard Macharia (Jamari’s dad) and Pauline Kinyua (Jamari’s mom) and our little boy Jamari Kiama.

Our 1-year -6months old son, Jamari Kiama, was diagnosed with Spinal Muscular Atrophy (SMA) Type 1, a rare genetic,life-threatening condition that has drastically impacted our lives.

SMA Type 1 is a genetic disorder that affects the motor nerve cells in the spinal cord, leading to severe muscle weakness and respiratory difficulties. Without treatment, the condition is often fatal within the first few years of life.(Doctors will say upto to two years).

However, there is hope for Jamari! A groundbreaking gene therapy drug called Zolgensma has been developed by Novartis which has the potential to save his life by addressing the root cause of SMA.

The challenge we face is that Zolgensma comes with an astronomical cost of $2.1 million, and it is crucial for Jamari to receive this treatment before he turns two years old. Time is of the essence, and we are fervently working to raise the necessary funds to give our beloved Jamari a chance at a healthy life.

We have started a fundraising campaign to gather the funds needed for Zolgensma, and we are seeking your support as we amplify our story.

We believe that together, we can move this mountain.

Please take part in moving it with us by Donating.Every coin counts and gets us closer to obtaining this life saving treatment.

It is our prayer and wish to see our son be able to sit,stand and run around and live a full life, all of which will be made possible through this treatment.

Thank you for taking part in this journey and walking with us.