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East County Wednesday, Sep. 23, 2009 10 years ago


by: Michael Eng Executive Editor

MANATEE COUNTY — Nick Dzembo keeps a small shrine of sports memorabilia at his office at Cadence Bank. A former football, baseball and lacrosse player, Nick has spent most of his life loving athletics of all kinds.

But now, he and his wife, Samantha, are facing the possibility that their son, Connor, 2, one day won’t be able to share that love.

Three weeks ago, a DNA test confirmed that Connor has the genetic mutations consistent with ataxia-telangiectasia, a rare, genetic neuromuscular disease that affects several body systems. The family will see doctors at The Johns Hopkins Hospital this Saturday for a clinical diagnosis.

Most A-T patients exhibit wobbliness that worsens and eventually confines that child to a wheelchair — often by age 10. A-T patients also have immune system problems, which cause respiratory problems and leave them 1,000 times more likely to develop malignancies in the blood system.

Many A-T patients die from respiratory failure or cancer by their teens or early 20s. A-T is extremely rare, with only about 500 children in the United States currently living with it.

“Talk about a reverse lottery,” Nick says.

Now, the Dzembos have dived headfirst into trying to save their son. They’ve connected with the A-T Children’s Project, an organization that raises money to fund research for a cure, and are raising money as Team Connor for participation in the 2010 Disney Marathon in January. In just two weeks, Team Connor has raised more than $4,200 — almost double their goal.

They also will launch a non-profit 501(c)(3) organization to raise more funds and awareness.

“This is life-changing,” Nick says of the diagnosis. “(After the news) we had two options — we could curl up into a ball and hide, or we could jump in and try to raise funds and awareness to find a cure. We’ve taken the latter.”

Born Oct. 8, 2006, Connor brought unparalleled joy to the Dzembo family. He’s their first and only child; Nick and Samantha call him “the light of our lives.”

From early on, Connor had frequent respiratory infections, and as he developed and learned to walk, the Dzembos noticed the telltale wobbliness in his steps.

“He just didn’t seem to be able to catch his balance,” Nick says.

Connor endured many tests as the Dzembos searched for answers. The Dzembos spent last New Year’s Eve in a hospital getting an MRI of Connor’s brain. They were looking for a tumor but found none. Obviously, that was good news. But it still left the Dzembos without an answer.

“We’ve kind of been on a roller coaster since his birth,” Nick says.

Finally, a neurologist at Shriners Hospital in Tampa recognized the symptoms. Subsequent DNA tests revealed the specific genetic mutation for A-T.

“It was devastating news,” Nick says. “But knowing does bring relief — be it miniscule. Now, we know what it is. There’s a name to it, a focus to it. Now, we can put a game plan in place to keep him healthy.”

Game plan
Aside from the respiratory problems and slight wobbliness, at this time, it’s hard to tell there’s anything wrong with Connor. He loves playing with his cars, watching baseball and playing catch with his dad. He plays soccer at Lil’ Kickers and attends Kids R Kids in Lakewood Ranch, where he loves to play with friends.

Connor also participated in the Early Steps, a program that assists infants and toddlers who exhibit developmental delays. Next month, when Connor turns 3, he will transition from Early Steps into the school system.

The Dzembos will keep Connor in occupational, physical and speech therapies.

“His cognitive skills — he’s right there,” Nick says. “We want to keep him challenged; we don’t want to set him back.”

And through the A-T Children’s Project and the Dezmbos’ own non-profit, they hope to do their part in finding a cure and raising awareness about the disease itself. A-T is so rare that some of the doctors the Dzembos met in the last two years had never seen a case. Studies have shown that finding a cure for A-T could also be beneficial to research on other diseases such as Alzheimer’s.

Nick also has spoken to Tel Aviv, Israel-based Dr. Yoseh Shiloh and UCLA’s Dr. Richard Gatti — two of the top A-T researchers in the world. Both said significant gains have been made in understanding the disease.

“Five years ago, they were still trying to understand this gene, and current research now is on finding a cure,” Nick says. “As a parent of a child with A-T, that gives me a shred of hope.”

Researchers also are examining the effects of antioxidant therapy on A-T patients, so the Dzembos are filling Connor up with antioxidant-rich berries.

And when he’s old enough, Connor is going to try his hand at T-ball.

“We’re going to try everything,” Nick says. “The biggest thing is we want his life as normal as possible — however we can do that.

“We have to be strong about it,” he says. “We can’t feel sorry for ourselves. We have to do everything we can for Connor.”

Contact Michael Eng at [email protected].

What is ataxia-telangiectasia?
A-T is a genetic neuromuscular disease that affects several body systems. A-T surfaces when both parents are carriers of a specific genetic mutation and pass it on to their child. It is extremely rare, with only about 500 children in the United States currently living with A-T.

Ataxia causes the degeneration of the cerebellum that leads to a lack of muscle control, which causes slurred speech, wobbliness and eventually confines the patient to a wheelchair.

Telangiectasia appears as red spider veins in the corners of the eyes, on the ears and cheeks.

Children with A-T often have immune system problems that leave them more susceptible to respiratory infections. A-T patients are 1,000 times more likely to develop malignancies of the blood system. Lymphoma and leukemia are particularly common.

Source: A-T Children’s Project

How you can help
Currently, the Dzembos are in the process of setting up a non-profit 501(c)(3) organization to raise money and awareness of A-T locally.

To donate or for more information, contact Nick Dzembo at 447-0573 or be e-mail at [email protected].

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