Mark Dant watched his son Kyle walk across the stage on graduation day in June 2017. This dad, like many in the audience, cried when his son’s name was called. But unlike all of the other dads in attendance, Mark and his wife never thought they’d see Kyle graduate college let alone make it to his 13th birthday.
You see, Kyle was diagnosed with Mucopolysaccharidosis I (MPS I), an incurable genetics disease when he was only three-years-old. MPS I means Kyle was born without an enzyme that breaks down particular proteins. Over time this leads to organ and brain damage.
“He asked me what it would be like when he died,” Mark says. “He was probably seven.” Not giving up on his son, this dad started a foundation for Kyle in hopes to find a cure.
“It’s amazing to see how parents never give up on anything,” Ryan says.
The money the foundation raised helped fund clinical trials to test a synthetic version of the enzyme. “Without that clinical trial, I wouldn’t be here today,” Ryan says.
Ryan made it past his 13th birthday and went to high school. But the drug wasn’t reaching his brain.
After Ryan wrote a Facebook post about his struggles, a nurse happened to see it and brought him to a different facility to test the drug by injecting it into his spine. It worked and even reversed some damage. Ryan was then able to continue his life and ultimately, graduate college.
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