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 the MOST adorable 4-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!

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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.

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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.

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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.

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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