Help William Stinson Fight a Rare and Difficult Battle
We are reaching out with heavy hearts and a deep hope that our community can come together to help support a little boy who is facing an unimaginably tough start to life. This is the story of William Rily Stinson — a beautiful baby boy whose middle name, Rily, stands for Remember I Love You. His journey so far has been filled with more medical challenges than most of us will face in a lifetime.
William’s story began at birth, when he swallowed meconium and had to spend a week in the NICU. Just three months later, he became extremely lethargic. After numerous tests, doctors discovered he had been born with bilateral hip dislocations and a rare chromosome deletion known as 3q21.1. This condition is so rare that only 13 people in the world are known to have it.
Further genetic testing revealed that William also has a UBA5 deletion, a disorder shared by fewer than 50 people worldwide. Both of these genetic issues are associated with severe complications and tragically, high mortality rates.
In addition, William has been diagnosed with several other genetic and neurological conditions, including:
DNAJC13
ACAD11
ACKR4
NPHP3
And most recently, infantile spasms, a serious and difficult-to-control form of epilepsy.
William now sees a pediatrician monthly and travels frequently from Chipley to Pensacola — often two or three times a month — for appointments with specialists including a neurologist, ophthalmologist, and orthopedic doctor. His care team is expanding, and his family was recently informed they may soon need to travel even farther, to Jacksonville, Gainesville, Houston, Boston, or Tampa for access to specialized clinical trials, depending on the results of a recent spinal tap.
As you can imagine, this level of care is physically, emotionally, and financially overwhelming.
William’s mother has epilepsy, which makes long-distance travel difficult and dangerous for her to do alone. His father, Tyler, often has to miss work to take them to appointments — and when he misses work, the bills don’t get paid. The family is already stretched thin.
William is on several medications including baclofen and omeprazole, which alone cost over $700 out of pocket each month because they are not covered by insurance.
This young family is just starting out. They have no savings and are doing everything in their power to provide for their son. It’s incredibly hard to put pride aside and ask for help, but they are doing so now, for one reason: to give William the best possible chance at life, survival, and comfort — and to ensure he has both his parents by his side during his long and uncertain medical journey.
We are asking you — friends, family, neighbors, and kind-hearted strangers — to consider making a donation to help this family afford travel, medications, and the care William urgently needs. No amount is too small, and every dollar goes directly toward keeping William safe, supported, and surrounded by love.
Please help us share William’s story. Together, we can help ease this family’s burden and give this little fighter the chance he so truly deserves.
With love and gratitude,
The Stinson Family
