A Paso Robles beauty supply shop owner and manager are sponsoring a fundraiser Saturday, Jan. 10, for a family they’ve never met, to help a Bay Area baby with local ties and a rare disorder often referred to as “bubble boy syndrome.”
Phoenix Archer Wilkinson, now 4 months old, underwent a bone-marrow transplant at UC San Francisco Hospital on Dec. 30, following a rigorous two-week course of 10 sessions of strong chemotherapy, treatment designed to kill all the bad T cells before surgery.
Born more than a month early, Phoenix was diagnosed about a month later with the rare, genetic Omenn syndrome, a type of severe combined immunodeficiency condition often referred to as “bubble baby disease.” Omenn patients are extremely vulnerable to severe infectious diseases early in life because their immune systems are so highly compromised that they are considered almost absent. Some “bubble babies” must live in a sterile environment.
Phoenix’s parents, Pat and Kristen (Anderson) Wilkinson, are Coast Union High School graduates who were active in the Cambria community.
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The couple has taken turns living in the hospital with their ill child.
Family members have lived on the North Coast for decades, including the baby’s great-grandparents, Don and Mary Anderson. The baby’s grandparents are Cambria contractor Mike Anderson, Kim Anderson of Templeton, and Kim and Leslie Eady of Cayucos, who own the Cambria Shores Motel in Cambria.
A mid-November story in The Tribune about Phoenix’s medical crisis tugged at the heartstrings of Pat Bingham and Katy Chasteen, respectively owner and manager of Westside Beauty Supply in Paso Robles.
“I have a 17-month-old (baby) at home,” Chasteen said. “I can’t imagine what Phoenix’s family is going through. We wanted to help.”
The two women then launched a fundraiser to help pay medical and other expenses the Wilkinsons have incurred during what will continue to be a lengthy hospital stay and recovery period for Phoenix.
Half of the raffle’s proceeds will go to the medical fund for the ill child, the other half to the raffle’s winner. Tickets, priced at $5 each, can be purchased at the store or by phone with a credit card (237-7746).
The raffle continues through Sunday, Jan. 11. Winners need not be present for Monday’s drawing, which also will include a trip to Las Vegas and a one-night stay in Avila Beach. The store is near Target at 2307 Theatre Drive, Suite 500.
Bingham and Chasteen will continue to accept raffle donations through Friday, Chasteen said.
But the fundraiser’s big day of fun will be Saturday, Jan. 10, when all store product prices will be discounted by 20 percent, entertainment is planned and goodie bags will be distributed.
Each donor who buys $10 worth of tickets will get a $10 store gift card, and if donors present their raffle tickets at the nearby Quizno’s that day, they’ll save 25 percent on their meals.
There’s also a benefit fund for Phoenix at Heritage Oaks Bank. Donations can be made at any branch.
From start to finish, Phoenix is likely to have been in the hospital for close to a year. Costs mounted quickly, including for the successful $500,000 transplant, chemotherapy regimes, sterile housing and lost income.
Phoenix, who’d had a bad reaction to one of the chemo agents, which caused a severe rash, is “a pretty unhappy guy right now while his body is trying to get settled down” after all he’s been through, according to an email interview with Don Anderson.
The transplant was successful, he said, and doctors told family members that “the donor had a ‘plethora’ of marrow, so they were able to freeze some in case Phoenix needs a booster. Now he stays in the hospital until March for observation and daily monitoring. If he responds well,” he will be able to go to the family’s San Francisco home, but he’ll still “have to spend a few hours in the hospital on a weekly basis.”
Preparing for the homecoming is a stringent process, Anderson said. “The home must be sterilized before he can enter, and his room where he must stay for up to a year must be super clean.” Also, “anyone entering must scrub up” first.