Damian is the most adorable 2-year-old ever (I am his mom, but I promise it's true)! He loves waving at everyone and every thing, he loves when I sing songs with him, and he LOVES to read books!
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).
Essentially, his body is unable to break down a certain fatty substance, so it builds up in the cells of his organs (especially his liver and spleen). His brain is also affected, causing neurodegeneration that can be likened 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 #SaveDamian <3
About the Campaign Beneficiary
Wylder Nation Foundation, a 501(c)3 non-profit, is the only organization laser-focused on developing treatment for infants with Acid Sphingomyelinase Deficiency (ASMD) and neurological degeneration, also known as Niemann-Pick Disease Type A.
Founded in 2014, WNF has disrupted the traditional process of medical research by bringing together experts from various disciplines and medical facilities across the globe to focus on providing a solution to this devastatingly fatal disease. And it's working.
Now nearing the tail-end of intensive research, WNF is finally close to ending the death sentence of ASMD. With a surge in funding and public awareness, there is HOPE for my son Damian as well as every baby currently fighting this disease today.