Anchorage Baby Fighting Rare Disorder
Friends, family holding fundraiser to help with costs
ANCHORAGE - For 9-month-old Hayden Boone, a rare disorder may force him to spend his first birthday in a Seattle hospital. Diagnosed with “bubble boy” disease, Hayden and his mother are fighting a courageous battle so he can live a normal life.
Imagine living your life isolated from everyone else because you are vulnerable to get sick all the time. That's the world Hayden and his mother are facing, because he has Severe Combined Immunodeficiency, or SCID. In plain talk, that means he's missing cells, which if they aren't replaced, doctors say will kill him in the first year of his life.
“He always some kind of infection, he had thrush, he had a blood infection, and he had about four or five ear infections that would never clear up,” said Boone, who after months of frustration, and when Hayden was admitted into the ER in Anchorage with pneumonia, was she able to find out he had SCID, in which his body wasn't able to make antibodies on its own.
Dr. Teresa Neeno diagnosed Hayden, and says SCID goes beyond a runny nose or a common cold, which can be cleared up by medicine. “It’s clearly different from SCID where they are going to be whoa sick, bad sick. They're hypoxic, they are breathing fast, and they are not able to eat. Of you have more than ten serious infections in a year that require antibiotics you should be worried.”
Doctors discovered Hayden was missing the "T" and "NK" cells that create the antibodies. He and his mother were rushed to Seattle's Children's Hospital to be placed on a list for a bone marrow transplant to recreate his immune system. “If we don't do anything about SCID, it’s universally fatal in the first year of life,” said Dr. Teresa Neeno, who is an allergist at Allergy, Asthma, & Immunology Center of Alaska.
“I had to just bring him down here on a whim, and I just have so much support and love up there it’s made it a lot easier, but it’s still hard to be far away,” said Boone, who says waiting for a match is hard enough because the financial costs are adding up.
“Just the medevac from Anchorage to Seattle was $80,000,” said Boone. “That was our bill when we walked into this hospital and I can't even imagine what the bill will be at the end.” But she says it's worth the price tag to give Hayden the chance at a normal life, like everyone else.
“I keep on telling him he's my million dollar baby,” said Boone. “Anybody would do that for their child, and that's what I’m doing right now, he's my job right now.”
In order to help Jacquie and Hayden deal with costs while they are gone, her family and church are holding a spaghetti feed, bake sale, and silent auction. It will be July 27 at First Baptist Church of Anchorage from 5 to 8 p.m. The rates of SCID are about 1 out of every 100 thousand births, and Alaska is set to start screening for it next year.