Foundation fights brainstem tumors

By Todd Cohen

CHARLOTTE, N.C. — On Jan. 22, 2006, while playing basketball with his three brothers, five-year-Tyler Scottold Tyler Scott of Charlotte fell and said he had hurt his wrist.

While he found nothing wrong, the family doctor noticed that Tyler was not using his left hand, and he suggested a follow-up visit.

Eight days later, Tyler was diagnosed with a brainstem glioma tumor, and within two days was accepted for an experimental treatment program at St. Jude Children’s Research Hospital in Memphis.

But after his parents took him to St. Jude, doctors there concluded he could not be treated.

On Feb. 8, Tyler died.

To help fight the disease, which afflicts about 300 Americans a year, most of them children ages five to nine, Tyler’s parents, Howard and Dana Scott, decided to form a foundation, known as Tyler’s Treehouse.

Mainly through a 5K road race and a golf outing at Firethorne Country Club, the foundation has raised $112,000 and given $50,000 to St. Jude and another $8,800 to local children’s programs.

Within 10 years, Howard Scott says, the foundation should be raising $1 million a year.

This year, he says, the foundation again will sponsor the race and golf outing, and probably two more races, in Greenville, S.C., and in Atlanta.

Named for a 300-square-foot treehouse that friends built for Tyler in the Scotts’ backyard after his diagnosis, the foundation this year also will begin seeking support from private foundations and donor-advised funds, as well as corporate sponsorships and contributions.

Both fundraising events have generated significant corporate support.

The golf outing, for example, featured a sports auction with items from the Carolina Panthers, including a suite at Bank of America Stadium donated by Panthers’ General Manager Marty Hurney for a televised Monday night game.

Every dollar the foundation donates to St. Jude goes to a fund that restricts its spending to research into brain stem glioma.

All brain stem glioma tumors are terminal, and most people diagnosed with the disease die within four to 10 months, says Brett Sovine, an attorney in the Charlotte office of Brown Brothers Harriman Trust Co. and secretary/treasurer of Tyler’s Treehouse.

Howard Scott says little is known about the disease because biopsies to extract tissue from the tumors could damage the brain stem and so are never performed.

As a result, treatment typically consists of chemotherapy and radiation, although Tyler received neither type of treatment because the tumor had invaded his brain stem and his condition could not be stabilized.

After he died, his parents donated his brain to St. Jude, providing the hospital with its first sample ever of a brain stem glioma tumor with its molecular structure intact.

Researchers later performed a biopsy on Tyler’s brain and estimated the tumor had grown over two centimeters in just eight days.

“When we lost Tyler,” says Howard Scott, “my wife and I told St. Jude we would do everything we could to help them find out about the disease so other families would not have to go through what we went through.”

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