Our Story
Damian is the most adorable little boy ever! He loves playing the piano, reading books, listening to music, knocking over block towers, and most of all, snuggling!
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For the first couple years of Damian's life, no one could have possibly guessed anything was seriously wrong with my perfect boy. 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 (short for Acid Sphingomyelinase Deficiency, also known as Niemann-Pick Disease Type A).​
What is ASMD?
Essentially, Damian's body is unable to break down a certain fatty substance, so it builds up in the cells of his organs, including his brain, causing neuro-degeneration that presents similarly to Alzheimer's.​
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Most babies with ASMD die by age 2 or 3. Damian's case is more mild, but he was still not expected to live to age 5 without fast-tracking the development of treatment through a surge in funding and spreading awareness of the disease.
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Damian's Regression
Watching Damian regress has been like living his life in reverse. As you can imagine, it is excruciating to watch your baby get weaker and weaker in a skill, then one day lose it altogether - over and over again.
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At the peak of his strength (when he was 2 years old), Damian could pull himself to a standing position and cruise around furniture. He could say a bunch of words and phrases (his favorite was to call out for "Daddy!!"). He insisted on waving to every person he saw, in the hopes that they would smile and wave back at him. He could "read" books to himself and do the hand motions to his favorite songs. Forever curious and insatiably social, Damian used to point at everything and excitedly ask me, "what's that?!" all day long. Today, he has lost his ability to speak and his muscles have weakened to the point where his mobility is comparable to an infant. My mission is to make his weakened state only temporary.
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As Damian's once fully-functioning brain has become more and more filled with the fat he cannot break down, his nervous system has slowed down. Cells filling up with the fat cause the neural signals to work slower, then malfunction, and eventually not work at all.
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Cleaning up these cells is the key to saving Damian.
Two Treatments Accessed, One More to Go
Due to the growing success of this campaign, we were able to access the first-ever experimental brain treatment for ASMD. Damian has been taking this pill by mouth since 2022, and we have been so relieved to see the rate of his regression slow down considerably. It is without a doubt the reason we are still continuing our fight with Damian today. Our efforts to access this drug have also opened the doors for additional ASMD patients to also access this drug and enjoy similar benefits.
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Damian has also began a biweekly infusion drug, the first and only FDA-approved treatment for a much milder form of ASMD ("Type B"), which essentially treats most of the body, all except the brain. We have seen life-changing benefits since starting this drug and have seen the swelling of cells in Damian's previously very enlarged liver and spleen reduce down to normal size.
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While we have been able to help drive unprecedented progress in the development of treatment, I always say that "we did not come this far to only come this far." Damian is regressing slower than he was before these two treatments, but the lifesaving treatment to stop the regression altogether and allow for progress to take place is still in development.
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I am determined to save my baby's life and I will continue to do whatever it takes to win this fight, once and for all.​
About the Campaign Beneficiary
Wylder Nation Foundation, a 501(c)3 non-profit, is the only organization laser-focused on developing treatment for children suffering the neuro-degenerative effects of Acid Sphingomyelinase Deficiency (ASMD), historically known as Niemann-Pick Disease Type A.
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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.
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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.
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All donations made directly to the Wylder Nation Foundation are tax-deductible. You can make a direct donation here.
