- Associated Press - Saturday, June 27, 2015

GALESBURG, Ill. (AP) - Zach Dee was just a baby when the doctors told his parents their little boy probably wouldn’t live past the age of 5.

When he was 5 months old he was diagnosed with Wiskott-Aldrich syndrome.

When Dee was 9 or 10 years old, the doctors sat him down and explained to him he would probably be dead before he saw his 12th birthday.

“And after I turned 12, they told me I’d probably be dead by my mid-20s,” Dee said. “Then they told me no one with the severity of my disease makes it past 30.”

Dee is 23 today and doing his best to keep proving the doctors wrong.

Wiskott-Aldrich syndrome presents as abnormal immune system function and a reduced ability to form blood clots. It is a condition primarily affects males - one case per million males worldwide.

Individuals with Wiskott-Aldrich syndrome have microthrombocytopenia, basically a decrease in the number and size of blood cells, known as platelets, involved in clotting. This platelet abnormality, which is typically present from birth, can lead to easy bruising or episodes of prolonged bleeding following minor trauma.

“When he was just a baby, we took Zach to the emergency room because he had RSVN, a sickness babies get sometimes,” said Tracey Crawley, Dee’s mother.

“It was there that the doctors found he had a very, very low platelet count and they sent him to Peoria.”

After two weeks of testing, Dee’s parents were told the diagnosis.

“Today, kids diagnosed early with it can live longer with a bone-marrow transplant. They can do the transplant by the age of 5,” Crawley said. “But that wasn’t the case when Zach was diagnosed. Back then, the bone-marrow transplant procedure was much more risky - there was a chance it could kill him.”

Crawley dwelled with a specter no parent wants to confront - living longer than their child.

“It was horrible,” Crawley admitted. “I always tried to make things the best I could for him. I didn’t know how long he would be with me.”

Dee got what he and his mother called “great help” from the St. Jude Children’s Research Hospital in Memphis, Tennessee.

“They were just great to my son and really helped him,” Crawley said. “They made all the difference in the world for him.”

Dee said that as a patient in Memphis he started to understand death.

“I saw lots of other kids - with lots of diseases - who didn’t have a lot of hope,” he said. “By the time I was 9 or 10, I started to understand that I could die.

“It was hard. Thinking that I might not live to be older. Thinking about what would happen to me. I wasn’t scared so much as cautious. Cautious about life.”

Because Wiskott-Aldrich affects the immune system, Dee found himself more likely to get illnesses.

“I got things like cold sores - something a lot of younger kids don’t get,” he explained. “That was rough - because other kids don’t really understand things when you’re young.

“I was bullied. Called things like ‘Herpes Boy’ and stuff like that. It wasn’t always easy.”

One of the ways Dee escaped was through music. He wrote songs and tried to find ways to channel his pain into a creative outlet. By his teen years he joined some bands and played in front of audiences.

“I did skateboarding, too. I had to be careful, but I think I was a pretty normal teenager,” Dee said. “I practically grew up in Billiards, going to shows and getting a chance to sing.

“Music has always been my safety blanket. I always - no matter what - had music.”

At the age of 19, Dee no longer had the care of St. Jude. And he faces new obstacles.

“All of the medication Zach has had to take has destroyed his kidneys,” Crawley said. “He is in stage 4 kidney failure and it is a big obstacle to his staying alive.

“He’s on three blood-pressure medications and he’s seeing three specialists out of Peoria.”

And now Dee faces chemotherapy.

“It just seem like it never ends,” Crawley said. “I watch him do the chemo and it is so hard on him. I’ve had to watch him deal with the prospect of dying again. It’s just there, always with us.”

Dee and Crawley have one last hope - stem cell transplant. It is not a procedure covered by Medicaid.

“It’s, really, my only hope,” Dee said. “The kidney damage is now irreversible. But we hope by undergoing the stem cell therapy it can reduce the Wiskott-Aldrich, which would help me deal with the kidney issues better.

“It’s a chance for me to live.”

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Source: The (Galesburg) Register-Mail, http://bit.ly/1GpJBLk

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Information from: The Register-Mail, http://www.register-mail.com

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