COLUMNS

DeWayne's World - A tiny teen with a big personality

DeWayne Bartels

At 14, Drake Taylor stands only 39 inches tall. He is a primordial dwarf.

But, what the Dunlap middle-schooler lacks in size he makes for in personality.

Drake has an infectious smile and a small laugh that brings smiles to those around him.

But, he faces a big problem.

Drake is leaving soon for California to face brain surgery to treat the brain disease

Moymoya.

No cure

Moyamoya is a rare disorder with an unknown trigger. It causes blockage of the main blood vessels to the brain as they enter into the skull.

The blockage can cause strokes or seizures. And once the blockage starts, it tends to continue.

There is no cure for the disease.

I met Drake at his home in Dunlap last week.

When I walked in, I was shocked at his size. He stood on a chair peering into plastic boxes for components to make earrings. He enjoys making jewelry.

He had company — Tammy Schulz and Carol Barwacz, both of the Bartlett Police Department.

The pair of police officers met Drake a couple of years ago through their involvement with Special Olympics. When they learned of his impending brain surgery, they drove down from the Chicago suburb where they live to see him.

Drake was in high spirits with so much company. He was having a good day, his mother, Beverly, said. Good days have become fewer and fewer, she added.

Drake’s issues with Moyamoya began in May.

He had a bad headache one day at school. His aide at Dunlap Middle School, fearing something was not right, contacted Beverly.

She took him to the hospital for a complete workup. The hospital found nothing wrong in his brain scans.

But, the Moyamoya was there. Specialists found it.

Drake began going backward mentally.

“His I.Q. dropped from 65 to 40,” she said.

The reason was as the blood vessels in his brain shriveled the blood, oxygen and nutrients his brain needs were being blocked.

“The loss of retention is huge. He could spell his first and last name without help. Now, he can barely write his first name. He also can’t remember phone numbers,” Beverly said.

God has a plan

But, ever the optimist, Beverly smiled.

“He hasn’t lost his creativity though,” she said, looking over at him with his two visitors as they made earrings.

“He inspires others. The list of what he can’t do is long. But, he doesn’t go by that. I know God has him in his hands.”

The surgery is risky. Just the use of anaesthesia carries grave risks for the teen.

As I asked Beverly if she was prepared for any outcome, the smile on her face faded.

“Absolutely. I would know in my heart  he is with the Lord. He’s had plenty of opportunities to take him and hasn’t,” Beverly said.

“I’m focusing on a good outcome, like maybe him regaining some of his I.Q.”

Beverly said she has never looked at Drake and thought he has it rough.

“We look at it as being on a different journey through life. God has a plan for each of us,” Beverly said.

“He has always had such a bright spirit. He lives with such enthusiasm you don’t have time to worry about what’s next. It’s never been a hurdle. There’s so much he can do that we don’t worry about what he can’t.”

And, when you ask Drake what he’s best at he will tell you it is pitching.

He walked over to a cabinet and brought over a Peoria Chiefs baseball in a plastic container. The ball bears the signature of Bruce Sutter, the famed Cubs and Cardinals saver.

Drake explained he had thrown out the first pitch at a Chiefs game where Sutter was on the mound with him.

“I’m a better pitcher than Bruce Sutter,” he said.

But, Drake’s real passion is his farm animals. He has a miniature horse, sheep, chicken and miniature ducks.

They are all gone now, being cared for by friends and family while Drake prepares to travel to California for his surgery.

Finances

Drake’s health is not the only cloud hanging over the small family.

After insurance picks up its part of the tab the family is looking at about $100,000 in uncovered costs.

“We’re already struggling with some of the pretesting. Claims get denied,” Beverly said.

“It’s a full-time job just staying above water. We are not focused on that though. We don’t have a choice. Losing the house and car is not even relevant to us.”

Luckily, for the Taylor’s some others are focused on the finances.

A benefit is coming up Friday for the family, a benefit that was kept from them until recently.

The benefit is from 5-10 p.m. Friday at Kickapoo Creek Winery, 6505 N. Smith Rd., Edwards. The cost is $20 per person which includes dinner. There will be a silent auction, live music, a bake sale and a cash bar. For more information call 692-6224.

“We’ve been overwhelmed by the support,” Beverly said.

She looked over at Drake who had tired of making jewelry. He was walking around in a Darth Vader mask.

“He’s such a gift,” she said.