A Santa Clarita family is pleading with the community for fundraising support after their 2-year-old son received a “devastating diagnosis,” and without treatment, he will likely die before his fifth birthday.
Recently diagnosed with Acid Sphingomyelinase Deficiency (ASMD), a fatal disease, 2-year-old Damian Markham is eligible to receive two potentially life-saving treatments, but funding is desperately needed to speed up the timeline. With help from the community, Damian could have a shot at life, according to his family.
“Everyone who meets Damian is instantly smitten with him,” Damian’s mom, Brittany Markham, said in a GoFundMe post. “My 2-year-old is truly an angel on earth – sweet, smiley, social, and has recently started cupping his cheeks with his hands to form the cutest smile you’ve ever seen!”
ASMD, also known as Niemann-Pick Disease Types A & B (NPA & NPB), is a genetic condition that affects the liver, lungs, spleen and blood as well as the digestive system.
Damian’s diagnosis revealed a mild form of Type A ASMD, the most severe form of the disease that causes an enlarged liver and spleen, loss of muscle tone, failure to thrive and rapid neurodegeneration that leads to death typically by 3 years of age, according to Damian’s GoFundMe.
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Because any neurological damage that Damian endures likely cannot be reversed, time is of the essence.
Damian’s family is seeking fundraising to slow the progression of his disease to reduce his chances of dying before his fifth birthday.
“If Damian was always meant to have a short life, then I am honored – honored – that God entrusted me to give a truly perfect person a life’s worth of love,” wrote his mother in a blog post.
Research at the Wylder Nation Foundation has uncovered a small molecule that passes through the blood-brain barrier that has displayed hopeful results at potentially slowing or stopping the rapid course of neurodegeneration.
Additional research involves gene therapy that could potentially replace the defective gene responsible for Damien’s disease with a functioning copy of the gene for a more permanent treatment, according to the GoFundMe.
“God knows I will do whatever it takes to extend my boy’s life,” his mother said in a blog post. “I believe Damian’s mission in life goes beyond bringing love and joy to our home (though he has certainly done that a million times over). I think Damian and I have work to do together, and I think it’s defeating this ruthless disease. We are both fighters now.”
To help aid Damian’s potentially life-saving treatment, his fa
mily is suggesting several avenues to get the Santa Clarita community involved:
- Donate to the family’s GoFundMe
- Share on all social media with the hashtag #SaveDamian
- Share the family’s GoFundMe and these steps to all contacts
- Leverage any avenue to make this campaign go viral
All contributions through the family’s GoFundMe are scheduled to go to the Wylder Nation Foundation, a non-profit organization that has been funding ASMD research that could give Damian a shot at life.
As of 2 p.m. Tuesday, the GoFundMe has raised almost $30,000 of their $500,000 goal.
100 percent of the GoFundMe’s donations are expected to be put towards fast-tracking the Wylder Nation Foundation’s research and initiating a clinical trial, according to Damian’s GoFundMe.
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