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By Tatiana Zarnowski, May 16, 2003

Last updated: Friday, May 16, 2003 12:15 PM EDT

Douglas Fickel, 8, loves to fish, swim, and do math problems at school.

A thin boy with a sweet smile, he turns pensive when talking about the things he can't do anymore.

His face lights up when he talks about shooting pool, and he gestures to the pool table in his family's sunroom. "But I haven't done that in a while," he says, his face clouding.

Douglas was diagnosed with ataxia-telangiectasia, or A-T, about three years ago.

He still can walk and swim in the pool at his family's Middlesex Township home. But he doesn't have the energy of a normal second-grader, often sleeping through the evening after a day at Middlesex Elementary School.

When he talks, Douglas raises his fingers in front of him, seeming to pull out the words that he pronounces in spite of twitching vocal muscles.

He used to play baseball but no longer can hit the ball or run the bases. Now he is a "bat boy" for his team, cheering on friends from the sidelines.

Hundreds expected to walk

Douglas will take part in the A-T Walk for a Cure on Sunday. Aided by parents, Doug and Pam, he will ride the two miles in his "cruiser," or wheelchair.

Douglas is the youngest of three children. His sister Samantha, 14, is an eighth-grader at Eagle View Middle School. Emma, 11, is a fifth-grader at Middlesex Elementary.

The Fickels expect more than 300 people to turn out for the rain-or-shine fund-raiser. Most will be family and friends who know Douglas and his family, including many people from Middlesex Elementary School.

He and his mother talked to a group of future CV Midget Football Association cheerleaders and their families on the first day of tryouts this week.

Yvonne August, spokeswoman for CV cheerleaders, says the sixth-, seventh- and eighth-grade Midget girls and their families now are excited about helping to find a cure for the fatal disease. "It was really marvelous. The girls just showed such interest" after hearing Pam and Douglas speak.

Cheerleaders at other levels also received the brochures, and several are raising money for the walk.

The cheerleaders don't have a monetary goal in mind, August says — "just to raise as much as they can for Douglas."

Pam Fickel says this week's began to accomplish that. "One man came up to me afterward and handed me a check for $100," she says. The man said he couldn't make it Sunday but wanted to help.

Downhill slide

However, Douglas's condition is at the beginning of a downhill slide. "I would have to say last year Douglas reached his peak," she says.

In January the Fickels ordered a walker. He uses the wheelchair for long distances for now. At some point in the near future he will use it all the time.

This year he got a one-on-one aide who helps him in the classroom at school.

Pam Fickel says Douglas wasn't diagnosed until he was 5 years old, but she sensed something was wrong earlier. "When he was about 15 months old, I knew already that something was not right."

Douglas fell down about 40 to 50 times a day and drooled a lot. She told his pediatrician something was wrong.

The doctor launched a series of MRIs and other tests.

An MRI unit had just been installed at Carlisle Hospital. Douglas was the first child to get a scan there, she says. He subsequently was scheduled for MRIs every six months to compare the results.

Dr. Todd Barron, chief of pediatric neurology at Hershey Medical Center, told the Fickels it might take awhile to get a diagnosis. She remembers him saying: "I believe there will come a day when the monster will rear its head."

Dreaded moment arrives

Ironically, it was at the next checkup, in November 1999, that the doctors "started asking these strange questions," including when she had first noticed the red veins in Douglas' eyes.

Then Barron said : "'I think the monster has reared its head.'"

Douglas had A-T.

The doctors explained Douglas had grown faster than the disease progressed in previous years. So it looked as though he were getting better. For a stretch he would be in good health, and then decline, they said.

Douglas is a patient at the only medical center in the United States devoted to A-T, the A-T Clinical Center at Johns Hopkins in Baltimore.

What is it?

Ataxia-telangiectasia is a rare, degenerative disease that affects multiple body systems and is fatal.

There is no cure.

Children typically show symptoms by age 2, although the diagnosis process sometimes takes years because few doctors are familiar with the disease.

First symptoms include lack of balance and slurred speech caused by lack of muscle control, according to the A-T Children's Project's website, www.atcp.org.

Ataxia refers to a progressive degeneration of the cerebellum, which contributes to a loss of muscle control. Children with this disease lose their ability to write, and speech becomes slow and slurred.

Telangiectasia (teh-LAN-jick-TAY-sha) refers to tiny red blood vessels that form in the corners of the eyes or on ears or cheeks.

About 70 percent of children with A-T also have problems with their immune systems, suffering from chronic respiratory infections and lung infections. They have a predisposition to blood cancers and often cannot get needed treatment because of an extreme sensitivity to radiation.

They sometimes develop mild diabetes, have difficulty swallowing and are prone to slow growth.

Most children with A-T are wheelchair-bound by age 10 and die of respiratory problems or cancer by their teens or early 20s.

Treatment is limited to slowing down specific symptoms — boosting immune systems, for instance, and physical and speech therapy to help children control their muscles.

FYI

An "A-T Walk for a Cure" for children with ataxia-telangiectasia, or A-T, will begin in Boiling Springs at 2 p.m. Sunday.

The two-mile walk will start at Boiling Springs High School and continue to Children's Lake, where walkers will go around the lake.

To participate or donate money, call Pam Fickel at 249-0590 and leave a message.

Anyone wishing to sponsor a CV cheerleader who plans to walk may give checks to Penny White in the Cumberland Valley High School Attendance Office in the old ninth-grade building or to Leslie Gargiulo at Good Hope Middle School office. Checks must be made payable to "A-T Children's Project."

Florida-based A-T Children's Project uses all donated money to search for a cure for the disease, Fickel says. One of the founders has two children with A-T, and he funds all the overhead, staff pay and marketing.

Checks or money orders also may be sent directly to the A-T Children's Project, 668 S. Military Trail, Deerfield Beach, FL 33442-3023. Credit card donations may be made by calling 800-543-5728 or going online to www.atcp.org