Baby with Rare Disease Closer to Getting Life-Saving Treatment in Belgium
(PUYALLUP, Wash.) — It was after bath time and just before Jenna Buswell sat down to rock her 7-month-old son to sleep, when his body went limp.
“It was awful. He was unconscious for 25 seconds and taken to the hospital by ambulance,” Buswell said of her son, Casen.
The infant is only one of 14 people in the world who suffer from a rare vascular disease called glomuvenous malformations plaque type.
The disease causes Casen’s breathing to be labored and his blood vessels, skin and muscles to harden. It will only worsen as he gets older unless he receives life-saving care in Belgium costing hundreds of thousands of dollars that the working class Puyallup, Wash., family just doesn’t have.
One week after the hospital scare, the Buswells have a lot to smile about. Not only has Casen had a “good” week, but they’ve received some significant financial help.
Racing enthusiast Ron Cook, 53, from nearby Arlington, raffled his beloved 1957 Chevy Bel Air on Sunday, netting $11,000 for the family, who were complete strangers to him before he saw a report on ABC News’ affiliate KOMO.
The good deed was then carried on when the winner of the car, octogenarian Della Phillip, vowed to sell it and donate the proceeds to the Buswell family.
“It’s hard to put into words that emotion when people you don’t know are so generous,” Buswell said. “This whole experience has shown not only me, but the entire community, how good people can be.”
For Cook it was personal. Baby Casen’s choppy breathing reminded him of his mother on her deathbed.
“My mom’s disease was from smoking cigarettes,” Cook said. “Casen hasn’t even had a chance to live.”
Tens of thousands of dollars have been raised in the community and at an online page set up by Jenna Buswell, but Cook wants more people to know about Casen so he can get the lifesaving treatment the boy needs in Belgium.
“It’s going to take hundreds of thousands of dollars,” Cook said. “We’re not going to be able to raise the money here.”
Dr. Miikka Vikkula and his wife, Dr. Laurence Boon, are the only doctors in the world who have established a treatment for the condition. The couple practices in Brussels, 5,000 miles from the Buswell’s Washington home.
This past summer, the family made the trip to Belgium to meet with Vikkula and Boon, where they learned Casen will need monthly laser treatments for up to three years, which will help keep his vessels from hardening. The procedure will hopefully give him a shot at living a normal life, Buswell said.
“Our doctors in Belgium are the only doctors we’ve seen who have been able to give us a clearer picture about what we need to do to treat him,” Buswell said. “We’re struggling with how are we going to provide that for him.”
The laser treatments were supposed to start when Casen turned 18 months, however his labored breathing and his hospital scare last week have caused them to reevaluate their plan.
Next month, the family will travel to the University of California at San Francisco where they will meet with a board of doctors who have been communicating with Boon and Vikkula.
“They will do an evaluation to see how progressed he is. We need to find out, is our timeline now or do we have a few months to get everything organized before we make a life-altering move to Belgium?” Buswell said.
Buswell, a special education teacher, and her husband, C.J., a contract administrator at a construction company, are looking to move to Belgium, a place where neither has ties, to cut down on the costly commute and hotel expenses.
The generosity of people like Cook and Phillip, and other strangers around the world, are giving Buswell hope her family will be able to soon afford a move to Belgium and alleviate Casen’s suffering.
“Not a day goes by I don’t receive some uplifting note, message, donation or card on my doorstep,” she said. “The outpouring [of support] is what is keeping us fighting.”
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