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Benefit for youth afflicted with rare disease planned

June 30, 2013
By LARRY SHIELDS - Staff Writer (lshields@salemnews.net) , Salem News

SALEM - At 15 years old, Brendon Whitman's lifelong illness has taken a drastic turn for the worse.

He suffers from a rare disease called Immune Dysregulation Polyendocrinopathy Enteropathy X-linked (IPEX) which originates in the FOXP3 gene, located on the X-chromosome. He is one of about 12 people nationwide who have the disease which forces him to receive expensive treatments every four weeks. It has attacked his lungs, spleen and brain, according to his grandmother Bonnie Rhodes. "In the last year it has attacked his brain twice," she said.

A spinal tap relieved the pressure from the first one, diminishing headaches and allowing him to see. His spleen was removed in December.

Article Photos

Brendon Whitman

After the second attack, Brendon, who was born 10 and-a-half weeks premature, was lifeflighted to Rainbow Children's Hospital. He has a blood clot in the middle of his brain that is too risky to operate on. He went from a National Honor Society student in his past freshman year as a home-schooled student to having short-term memory loss after January, Rhodes said. Brendon started home schooling about the seventh grade.

His body couldn't take the rigors and Brendon, who wants to be a pediatric doctor to help kids, realizes now - with his short-term memory loss - that's in doubt, Rhodes said. During the attacks on his brain, doctors learned Brendon had several strokes that caused theseizures and he was confined to ICU for eight days. The IPEX has also caused him to get other diseases including Lupus, common variable immunodeficiency (CVID) and have to contend with vascular issues.

Rhodes explained the medications have weakened his spine and two years ago he had eight spine fractures forcing him to wear a brace, use a wheelchair and sleep in a hospital bed. "We had to get him a special bed because he still cannot sleep laying down, he basically sleeps almost sitting up," she said.

Doctors want him to take what is called a "Whole Exome Sequencing" test for all the genes that contain information required to make protein.

"They're going to go through every gene in his body to learn his gene make up - which genes to target," Rhodes said. "He's pioneering, paving the way for others diagnosed with this," she said.

The test, which will provide doctors with information to guide them in treating this complex disease which, Rhodes said, "keeps doctors guessing every day." The test costs more than $6,000. "But the insurance just refuses to pay for his testing," Rhodes said. "They don't deem is medically necessary, but for him it is."

She explained the family is required to go through counseling before the testing to prepare them for what they are going to find out.

"I wish I could get on national television to make people aware of this illness and how the insurance companies dictate your healthcare," she said. She did say that insurance does pay for some expenses.

The denial by the family's insurer has led to an attempt to raise money to defray the test costs. Aspaghetti dinner will be held from 4-7 p.m., Aug. 3 at VFW Post 892 at 496 Arch St.

Brendon is a Pittsburgh Steelers fan while his older brother, Clayton, 17 and younger brother, Tanner, 12 are Browns fans. He likes fancy cars and plays games on his Xbox. He used to play baseball and ride his bike. He is also an Ohio State fan. The physical activities "have been stripped away from him," Rhodes said, explaining that he fell while riding his bike and developed a bacterial infection.

He walks with his mom and dad, Bob and Kim Whitman, and he has a lot of food allergies. He can't eat beef or pork and his favorite is chicken strips and fries, especially from Bob Evans. He enjoys grapes and apples, Rhodes said.

"One thing about Brendon," she said, "this child never complains or asks, 'Why me?' and he could be in really bad pain and he never complains and that just goes to his character."

An account has been set up under the Bonnie Rhodes Benefit Fund for Brendon and she can be reached at 330-752-3700.

View the Brendon Whitman Story in Youtube. It is about 10 minutes: www.youtube.com/watch?v=ZJ4o-ABzpZY

For more information on IPEX, visit: ghr.nlm.nih.gov/condition/immune-dysregulation-polyendocrinopathy-enteropathy-x-linked-syndrome

www.ipexconsortium.org/ENG/index.html

lshields@salemnews.net

 
 

 

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