Bone marrow transplant could cure Wasilla boy's rare disease
The word "energetic" doesn’t quite describe 4-year-old Brandon Wiehe. When KTVA met him he was running circles around his kitchen making growling noises with his shark puppet.
“I think his preschool teacher at Pioneer Peak said it best, ‘Brandon is the feistiest preschooler there ever was,’” said mom Carly Wiehe. “Some have called him a full-throttle toddler or a fireball of burning joy.”
Brandon will be 5 in just a couple weeks. Developmentally, however, he’s about half that age.
“He’s very small compared to the other kids in his preschool. He goes to a special ed preschool because he’s not talking,” Carly explained.
That’s because Brandon has had a lot of challenges in his young life. While he’s a happy boy with an infectious, dimpled smile, he’s not physically healthy.
“He has constant colitis, he has abscesses, he’s had emergency surgeries and he’s been hospitalized,” Carly said.
His problems started when he was just 2 weeks old. Doctors hospitalized him for a high fever but they didn’t know what was wrong. Brandon kept getting sicker.
“Right before we were about to say our goodbyes to him, the diagnosis came back that it was [Chronic Granulomatous Disease]. They gave him an anti-fungal and he immediately got better. He had a yeast infection and almost died from a yeast infection at a couple weeks old,” Carly said.
Chronic Granulomatous Disease (CGD) is an extremely rare genetic condition that affects only one in about 200,000 babies.
“That means that he’s missing part of his immune system,” Carly said.
Brandon’s pediatrician, Dr. Jeff Brand, said that as far as he knows, there are only four children in Alaska with the disease, which typically is only passed on to boys. Patients he’s treated range in age from 4 years old to two young men in their early 20s.
Every day, Brandon takes a number of live-saving medications. Instead of a spoonful of sugar, he takes his medicine with a spoonful of ketchup.
A one-month supply of one type of his medication costs $55,000, which is covered by insurance.
Doctors told Carly that Brandon’s best chance for a healthy life would be a bone marrow transplant. He’s getting bone marrow from a cord blood donor that’s a 9 out of 10 match.
Cord blood is donated from from umbilical cords or placentas. It's rich in stem cells that are similar to the ones found in bone marrow.
The family heads to Seattle this month where Brandon will stay for more than six months. He'll get chemo treatment before the surgery and then spend several months recovering after the procedure.
While Carly’s insurance pays for Brandon’s medical care, it’s likely she could be paying for the out-of-state living expenses out-of-pocket. She says she'll need about $17,000 for living expenses to rent an apartment in downtown Seattle to be close to the children’s hospital. She said rent in that area is around $2,600 a month plus she has to pay her own mortgage in Alaska at the same time.
For a bone marrow transplant, Carly said cells from a living donor are ideal, but there wasn’t a good match for Brandon. That’s why he’s getting a transplant from cord blood.
In an effort to get more people signed up on the national registry, Carly’s friends at the Anchorage Airport Police and Fire Department are holding a “Be the Hero” bone marrow and blood drive on Saturday.
Emergency services dispatcher Savannah Gagne explained it’s a very non-invasive process to get tested. People who sign up will receive a kit in the mail that includes several cheek swabs. They send their samples in and they'll be added to the registry if they qualify.
The U.S. Department of Health and Human Services estimates about 17,500 people need bone marrow transplants every year.
“It really hit home because of our connection with Carly and Brandon but it’s also really important to us because the purpose of our job is to help people,” said Gagne.
Carly knows that bone marrow drive will likely change someone’s life, hopefully the way a transplant could change Brandon’s.
“If it’s successful, which it’s not guaranteed, he would be cured. And that’s what we all want,” Carly fought back tears.
The Airport Police and Fire Department’s bone marrow and blood drive is Saturday, April 6 from 1 to 7 p.m. at the station on Postmark Drive.
There is also a benefit dinner Sunday at the Palmer Moose Lodge from 4 to 7 p.m. It’s $20 for a ticket to the taco bar dinner. There will also be a silent and live auction.
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