At first glance, 5 1/2-month-old Jace Jones looks like any other growing baby.
The Paso Robles boy grins and giggles as his mother tickles him in a recent video — in another, he rocks around on the floor before rolling onto his stomach.
But Jace’s laughter and smiles hide a serious medical condition: He was diagnosed with Wiskott-Aldrich Syndrome, a rare immunodeficiency disorder, soon after he was born.
The disorder — which affects Jace’s white blood cell and platelet production — means his immune system doesn’t work correctly and puts him at risk for bleeding problems. It’s a genetic syndrome that affects 1 in every 100,000 to 250,000 male children, according to the Wiskott-Aldrich Foundation and St. Jude’s Children’s Research Hospital.
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Jace was diagnosed after his parents discovered blood in his stool, which led to weeks and weeks of tests and hospital stays. He’s spent much of his young life in Lucile Packard Children’s Hospital at Stanford, receiving platelet transfusions and immune system-strengthening drugs.
Jace’s parents, Rebecca and Andrew Jones, have had their lives turned upside down by Jace’s illness.
“It’s a learning experience for everybody,” Rebecca said. “It’s been a roller-coaster.”
Andrew, who works for Spurr Co. site development in Paso Robles, has had to take extensive time off work due to Jace’s lengthy hospital visits.
Rebecca, the tasting room manager at Justin Vineyards and Winery, has been unable to work at all since Jace’s birth. His compromised immune system makes it impossible for him to go to day care, and the two have lived mostly in isolation for months to keep him from getting sick.
A special air filtration system and lots and lots of hand sanitizer currently protect Jace’s immune system from germs and irritants in rural Paso Robles, where the family lives.
“I always have to remind myself there’s so much about this I can’t control,” Rebecca said. “We just kind of have to ride it out.”
But relief is in sight — although no one in Jace’s family was a bone marrow match, an anonymous donor was found through the National Marrow Donor Program. The family plans to travel back to Stanford next week to begin preparing for the procedure.
What’s ahead for Jace
First, Jace will receive chemotherapy to kill off his disordered immune system. Then, he’ll receive the bone marrow transplant, which will be followed by months of check-ups to make sure Jace’s body accepts the transplant. After a year, Jace can begin to be introduced to a normal environment.
For now, Rebecca and Andrew are still in a “limbo period,” holding their breath and hoping the transplant goes through — one past donor didn’t pan out, so the family is trying to cope with lots of uncertainty.
“Of course, we’re terrified,” Rebecca said. “There’s nothing we can do.”
The couple is raising $50,000 to help with expenses through the Children’s Organ Transplant Association, and Jack’s Helping Hand has also pitched in for gas coupons.
Terri Monell, Rebecca’s mother, is helping the couple raise money. She said not being able to hold her grandson has been tough, and she marvels at her daughter’s fortitude: “I do a lot of crying for her.”
“We just pray everything will be OK,” she said.
How you can help Jace
Jace’s family has set up a website and donation portal through the Children’s Organ Transplant Association, so all gifts are tax-deductible.
To learn more and donate online, visit Cotaforjacej.com.
Checks are also accepted and can be made out to the Children’s Organ Transplant Association — just put “Campaign for Jace J” in the memo line. Mail payments to COTA 2501, West COTA Drive, Bloomington, IN 47403.
California Pizza Kitchen in San Luis Obispo is holding a fundraiser for Jace on Tuesday. Bring in the flyer posted on Jace’s website under the ‘Activities and Events’ section to participate. Visit Cotaforjacej.com to learn more about upcoming fundraisers and events.