My baby is dying from a rare genetic disease. Treatment is in development, but a surge in funding is needed for it to be done in time to save my son.
Please help me.
Damian is fighting terminal ASMD, but there is HOPE!
Damian is the MOST adorable 3-year-old ever (I am his mom, but I promise it's true)! He loves meeting people, playing on his toy piano, listening to favorite songs, and he LOVES to read books!
We always thought Damian was TOTALLY NORMAL & HEALTHY. Then, in January of 2021, I noticed Damian was starting to fatigue easily, and he started regressing in his development (stopped standing up, stopped scooting around, etc.). Many blood tests, ultrasounds, scans, and a biopsy later, Damian was diagnosed with a very rare and fatal genetic disease called ASMD (also known as Niemann-Pick Disease Type A). He has been getting weaker ever since.
Essentially, his body is unable to break down a fatty substance called Sphingomyelin, so it builds up in the cells of his organs (especially his liver and spleen). His brain is also detrimentally affected, causing neurodegeneration similar to Alzheimer's.
Most babies with ASMD die at age 2 or 3. Damian's case is more mild, but he is still not expected to live to age 5 unless we can fast track the development of treatment through a surge in funding and spreading awareness.
We are SO close to treating ASMD and changing the fate of so many who receive this death sentence. As his mom, I will do whatever it takes to save my son's life. Please help #SaveDamian