Shrub Oak Family Seeks Funds for Cure for Daughter’s Rare Disease

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Before Lisa Hodes was one year old, there were some signs that something just wasn’t right. One day she had some peculiar eye movements. Another day she couldn’t hold herself up.

When she went to the doctor, all her vital signs were normal. She later went to a neurologist and spent 12 days in the hospital.

“They thought it was some kind of virus,” Lisa’s father, Paul, said. “They did all kinds of tests. They poked and prodded and x-rayed. Everything from soup to nuts. Nothing came up.”

Finally, when she was about 18 months old, Lisa was diagnosed with a neurological disease called Alternating Hemiplegia of Childhood (AHC), a condition caused be a gene defect that affects only about 300 children in the United States.

There are only about 11 cases of AHC in New York State and Lisa, 13, who lives with her family in Shrub Oak, is the only one in the area, according to her father.

“She’s very smart. She can talk. She can read. She’s very observant,” Paul said. “Some children are more severe than others. Some are in a wheelchair all the time.”

Lisa attends a BOCES program at Pierre Van Cortlandt Middle School in Croton. Her mother, Renee, said she interacts with other girls with AHC through text messages and Facetime.

“Just because she has a disability doesn’t make her different than the rest,” Renee said of teenage girls. “We have one mission to end AHC.”

Some strides have already been made. A test for AHC that didn’t exist when Lisa was diagnosed has been developed.

“This gene that they’re looking at is one that’s very close to what affects Parkinson’s Disease,” Paul said. “The doctors feel there may be other children being misdiagnosed. There’s hope as long as they’re working on it.”

Lisa has a one-on-one aide at school and a personal aide that comes to her home three to four hours a day. She requires physical and occupational therapy and takes three different medications daily. Most of her medical expenses are covered by Medicaid, other than one pill which is not FDA approved and costs about $1,000 annually.

“We’re trying to find out how to cure this. They’re pretty close,” Paul said. “We’re trying to get the word out and educate.”

Anyone interested in learning more about AHC or to make a donation can visit www.ahckids.org.

 

 

 

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