Assistant Dean Making a Run at Helping Afflicted Nephew This Month

At the age of four months John Russell “J.R.” Grover’s parents and family knew something was wrong with their little bundle of joy.

His seizure-like motions and trouble sleeping spelled trouble for the blonde haired, green-eyed toddler, but his happy demeanor helped mask a dark secret.

It wasn’t for more than two years that he was diagnosed with Angelman Syndrome (A.S.), a rare neuro-genetic disorder characterized by intellectual and developmental delays, speech impediments, sleep disturbance, unstable jerky gait, seizures, hand flapping movements, frequent laughter/smiling and usually a happy demeanor.

Angelman Syndrome has confused the medical community and parents of Angelman children for hundreds of years, according to the Angelman Syndrome Foundation (ASF).

Initially A.S. was believed to be rare, but it is now thought that thousands of Angelman Syndrome cases have gone undiagnosed or misdiagnosed as cerebral palsy, autism or other childhood disorders.

Now, one University of Tampa administrator, who also happens to be the aunt of little J.R., is on a mission to bring awareness to the rare disorder.

This January, Stephanie Russell Holz, Assistant Dean of Students and Director of the Vaughn Center, plans to run just over 26 miles along with Casey Stevens, the assistant director of civic engagement and P.E.A.C.E.’s adviser.

The duo plans to raise $4,000 through sponsorships for ASF, whose ultimate goal is to prevent and cure A.S.

Already, the two have raised $2,900 thanks to sponsorships from family, friends, UT’s P.E.A.C.E. office and Phi Beta Sigma chapter.

“We are running a marathon to raise funds and awareness for a rare genetic disorder . . . that not many people even know it exists,” Holz said.

“When we’re running, we’ll be wearing T-shirts with J.R.’s picture and the symbol for the Angelman Syndrome Foundation,” she added. “So for me, personally, it’s something that I can do that J.R. isn’t physically able to do.”

Still, as she trains for next year’s ING marathon (Jan. 27, 2008) in Miami, Holz’s mind doesn’t stray far away from thoughts of her nephew’s limited world of “missed milestones, therapy and specialized nursing care.”

“I think it’s difficult too because nobody has really heard of it [Angelman Syndrome], and so nobody really understands because the syndrome itself doesn’t really get a lot of play in the media. That’s why I decided to run this marathon.”

Although he is only three and a half years old, Holz admits that her nephew has suffered through many ordeals including being misdiagnosed with cerebral palsy.

J.R. showed no sign that something was wrong until he was four months old. Around that time Holz said J.R. started having “seizure-like” motions.

“For the next two years, it kept getting more and more apparent something was wrong because he kept missing every milestone,” she said. “When he was suppose to be crawling, he never crawled. When he was supposed to sit up, he never sat up. So pretty much all the milestones you are suppose to have during those first two years he never had.”

But it was not until two years and a series of genetic tests later that J.R.’s parents finally had an answer to their son’s strange behavior.

Still, the news that the toddler had a rare disorder came as a surprise to the entire family.

“It was definitely a shock because this [Angelman Syndrome] came up a few years ago towards the beginning, and we were reading about it online, and we were just thinking, ‘Oh my God this is so horrible. Please don’t let it be this’,” Holz explained. “So we were really devastated about it.”

“It’s really sad and really hard because you just, you know, want him to be able to do the things that are so natural,” she admitted. “Like for me, I have a 15-month-old daughter and everything is so easy for her. But for him [J.R.] he took his first steps around three years of age when my daughter started walking at 10 months.”

Despite the devastation and sometimes challenging times, Holz plans to keep active and bring more awareness to others suffering the same fate as little J.R.

Anyone interested in sponsoring Holz and Stevens in next year’s marathon can just log onto

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