Chrystal Wilcox spends every moment of every day waiting for a phone call. Whether in the shower, at church, in the doctor’s office or in the few hours of restless sleep the 39-year-old mother of six is able to attain, Wilcox always has one eye—and often one hand—on her cell phone, hoping the next call will save her son’s life.
Wilcox and her husband, Chris, are foster parents to a 16-month old son named Clark, who is currently waiting for a new liver. Clark, who has been with the family since he was 6 months old and was officially adopted this October, has Alagille Syndrome. This affliction, which afflicts the heart and liver, is caused by abnormalities in the bile ducts, and has landed Clark Wilcox in the hospital “countless” times, according to his mother.
While the family awaits a liver transplant, they are also busy raising money for the inevitably costly procedure needed to save Clark’s life. They have raised a little under $6,000 as of this writing. Their goal is $50,000. When I ask Chrystal Wilcox what she wants people to know about her son, their family and their story, her response is succinct.
“Adoption is beautiful,” she says.
Chrystal Wilcox, born and raised in Yukon, Oklahoma, met Chris in high school. Chrystal gave birth to the couple’s first child when she was 16. The couple married a couple of years later, and relocated to McKinney when Chris took a job in IT. More biological kids followed, but fostering was never the plan.
Then the phone rang. The Wilcox’ eldest son, Christopher David, had a friend who needed help. The friend, who goes by “J”, was one of eight children in a single-parent household lacking stability.
“We chose to support his family,” Chrystal says.
That meant offering “J” a home for the summer. One summer turned into two years and what Chrystal calls “unofficial foster care.”
“We realized we were called to do foster care,” she says. The couple started fostering children in 2012, and have fostered over 30 children since. One child, now their daughter, was officially adopted in 2017.
“We weren’t looking to adopt again,” Chrystal says. “But we met Clark.”
Chrystal and her husband still remember the phone call from their child placement agency. It was a stormy night, and the bleating sound of a telephone ringing cut through the rain pounding the roof. The agency rep told Chrystal that they had a 6-week old baby boy who had sustained injuries because of abuse. Chrystal and Clark looked at one another.
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“6 weeks old?” Clark asked.
“Yes,” Chrystal said.
“Well, he’s never leaving our home.”
Chrystal drove to the hospital, and immediately realized his condition was far worse than she anticipated.
“He had facial features that didn’t look right,” she says. “His liver enzymes were really, really high, and it was not because of the trauma.”
After multiple follow-ups with specialists at Children’s Medical Center in Plano, the family learned that Clark most likely had Alagille Syndrome. A liver biopsy confirmed the diagnosis. Clark had inherited the disease from his biological parents, though neither knew they carried the gene.
“It’s not something doctors routinely scan for,” Chrystal says. “And if Clark has children, the odds are 50/50 he will pass it on to them.”
Alagille Syndrome has landed Clark in the hospital multiple times, and caused everything from a urinary tract infection to persistent jaundice and liver damage. For the Wilcoxes, each hospital stay meant sleeping shifts, lots of questions and long waits for answers. Eventually, the doctors told them Clark needed a new liver. A new wait had begun. Clark’s biological parents relinquished their parental rights, but Chrystal and Chris had to wait 90 days to officially adopt Clark. That meant 90 days before Clark could be placed on the extensive wait list for a new liver.
Chrystal does not have the vocabulary to describe how that wait felt. She doesn’t know how to describe the feeling that accompanies watching every second tick by, knowing Clark was closer to the waitlist, but also closer to liver failure.
“I couldn’t make time go faster,” she says. “Some days we thought, ‘We can do this.’ Other days, you can’t stop thinking about what could happen before he gets on the list.”
The 90-day wait ended in October, at which time Clark became a Wilcox and joined the waitlist for a new liver. While they await the call that tells them the wait is over, the family searches for ways to fund what could become a $800,000 expense. With help from the Children’s Organ Transplant Association (COTA), the Wilcoxes hope to raise enough money to cover the initial procedure.
“I would give him my liver, if I could,” Chrystal says. “People tell me that all the time. But their livers are too big. Clark needs a child’s liver.”
Until he can get one, Chrystal hopes, prays and waits. She passes the time by clinging to her cell phone, and thinking about how it will feel to finally get that phone call.
“It’ll be euphoria,” she says. “But then, it’ll be sad. Because that means another mother has lost her child.”
Give now: cota.org/campaigns/COTAforClark