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A boy from Spring is making medical history. He’s one of only 11 children in the world currently getting treatment for a rare and deadly genetic disease. Will Byers’ family is waging a battle against time to save not only their son but the other children who are affected.
Will is like most five-year-old boys. He’s social, loves to build things with his little sister, and run outside in his backyard to play on his pirate ship.
“Will has always been a happy, playful boy, full of energy and joy,” said his mom, Valerie Byers.
But unlike most kids, Will needs a medical miracle.
“Coming out of a geneticist’s office and being told to enjoy the time you have because there’s nothing we can do is not acceptable. We can’t let another family face that. We have to help them,” said Byers.
Born perfect in every way, it wasn’t until age 4 when Will’s parents noticed Will had missed some milestones. He would later be diagnosed with autism. It never seemed right.
This year his mom saw a story about a girl named Eliza who suffers from Sanfilippo Syndrome.
"As I watched the story about Eliza in the video I broke down because I recognized my son in her symptoms."
The diagnosis devastated the Byers family. Will’s tests came back positive for Sanfilippo Syndrome, a rare, incurable and fatal disease.
“If both parents are carriers, it's a one in four or 25% chance that that child will inherent Sanfilippo Syndrome. Sanfilippo Syndrome is characterized by the inability to breakdown a certain chemical in the body,” said Dr. Brett Graham, a pediatric geneticist at Texas Children’s Hospital.
Children who have it begin to lose all skills, the ability to talk, walk and feed themselves. Most die by the time they’re teenagers.
But, even knowing that, the Byers have hope.
This summer Will began traveling to Minnesota for biweekly infusions for the next six months as part of a groundbreaking enzyme replacement therapy clinical trial.
“He’s in the middle of hopefully a medical miracle. That’s what we’re hoping for,” said Byers.
The family is fueled by Will Power, their own online efforts to raise awareness about this terrible disorder.
To date, they’ve raised more than $60,000 for the Cure Sanfilippo Foundation, but even more funding is needed for upcoming gene therapy trials.
“Will there be a definitive treatment in the next 12 months? Probably not. But over the next few years, I think we can be optimistic there will be improvement in options for patients and families,” said Dr. Graham.
For now, the family records every song Will sings, every story he tells, hopeful that sweet voice never goes away.
“We can't look ahead , it's too much to think about right now. So right now we focus on him and we focus on enjoying every day with him."
That means celebrating birthdays.
Next week, Will’s wish will come true. He heads to Disney World, where his family will continue to share his story and be his greatest advocate.