Hello, my name is Rose.

My son Christopher Revolution was diagnosed with SMA type-1 just two weeks after his birthday on May 2nd, 2024. Spinal Muscular Atrophy is an extremely rare genetic disease that can be deadly, and often leads to lifelong impairments such as inability to walk, stand, use the bathroom without assistance, or care for themselves in a variety of ways.

I have always had muscular/skeletal problems myself, but I have been left undiagnosed despite seeking medical attention. Apparently, Christopher’s father and I both were carriers for SMA. Christopher has SMA type 1 - the most severe form of SMA.

LUCKILY because Christopher is under 2 years old, we were able to receive treatment quickly at Stanford Children’s Hospital on June 20, 2024. This was a six-hour process in which he received an IV infusion of the new drug Zolgensma. Luckily, our insurance Medi-Cal is helping out with most of the hospital and travel expenses. However, there are still expenses left that fall on me. I am requesting help for a new/used reliable car to make it to all of his doctor and lab visits.

Doctors and researchers are still learning about SMA and finding ways to treat this life-threatening disease. Before just 2 years ago there was no way to test for this condition, we would have had to wait until symptoms were noticeable.