Metro Atlanta / State News 8:29 p.m. Thursday, September 17, 2009

Third-grader Jason Holtzclaw, 8, was family ‘hero’

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The Atlanta Journal-Constitution

Jason Holtzclaw spent eight years on this Earth.

In that brief time, he taught relatives and others to celebrate life, regardless of circumstances.

“It’s a lot we can learn from children if we stop, slow down and take the time,” said his mother, Rhonda Holtzclaw of Lawrenceville. “He taught us how to stop and smell the roses.”

“He was our hero.”

Hurler Syndrome is a rare, genetic disorder known as “the storage disease.” Carriers cannot break down sugar molecules called glycosaminoglycans. Sugar accumulates in vital organs and all over the body.

Typically, disease symptoms appear between the ages of 3 and 8. At 11 months, its signs were already visible in Jason, his mother said.

“We knew from the beginning,” she said. “His head was much larger than his body. He wasn’t walking, crawling and thriving like he should. He had no energy, no get-up-and-go.”

Early in his life, all seemed hopeless. Then in 2003, the Federal Drug Administration started a trial drug infusion program to treat the disease. Fortunately, Jason got the actual drug, aldurazyme, not a placebo. It recharged Jason and gave him more moxie.

As a result he lived a kid’s life the past six years. He liked to swing, swim and play with his red toy truck. He enjoyed feeding ducks at Briscoe Park.

“The drug changed his life completely,” his mother said. “He went from not having such a good quality of life to loving everything.”

“All in all, this medicine really did do a lot,” said his grandmother, Cindy Whittle of Snellville. “We weren’t supposed to have him past 3. We got to have him until he was 8 and that was awesome.”

The memorial service for Jason Dean Holtzclaw of Lawrenceville is 1 p.m. Friday at Briscoe Park in Snellville. He died Monday at Children’s Healthcare of Atlanta at Scottish Rite from complications of Hurler Syndrome. Tom M. Wages Funeral Service, Snellville chapel, is in charge of arrangements.

Jason was a third-grader in a special needs class at Cooper Elementary School in Loganville. He was nonverbal, but had ways to express himself.

“Jason brought excitement to the classroom every day,” said Fay Hunczak, his teacher. “He brought a special spark to the classroom and to his classmates. He never stopped moving.”

When it came to nicknames, he had three: “Biggie Boy,” “Tater,” and “Sheriff Tater.”

“When he was born, he was a big boy, so I always called him my sack of Idaho potatoes,” his grandmother said. “Tater stuck with him forever.

“Then he became Sheriff Tater because after he got older, his hips were very bad and he didn’t walk like normal children. He swung them from side to side, like in the old westerns.”

Additional survivors include his father, Dean Holtzclaw of Virginia Beach, Va.; two sisters, Haleigh Whittle and Brook Whittle of Lawrenceville; his grandfather, Steve Whittle of Snellville; and his great-grandparents, James and Montine Vowell of Loganville.

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