Shrub Oak Family Fights To Find Cure For Daughter's Disease

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Lisa Hodes is a 13-year-old Yorktown resident who suffers from a neurological disorder.
Lisa Hodes is a 13-year-old Yorktown resident who suffers from a neurological disorder. Photo Credit: Courtesy of the Hodes family

YORKTOWN, N.Y. -- A family in Shrub Oak is on a mission to raise funding to help find a cure for their 13-year-old girl.

Lisa Hodes suffers from alternating hemiplegia of childhood, and her parents, Paul and Rene, have joined the board of directors and are involved in raising money of the AHCF Foundation.

AHCF is a rare neurological disease that impacts  300 children in the United States and is caused by a gene defect. 

The Hodes have been active for the last four years doing their best to get the word out on a disease not many people are aware.

"We don't get a lot of help from the government," Paul Hodes said. "It's mostly on parents to raise money."

Lisa was first taken to the doctor as a baby when the Hodes noticed something wasn't right with her and she would go limp. At first doctors didn't find anything and she was later diagnosed with a virus.

"They just sent us on our way," Paul Hodes said. "It was crazy."

Lisa was later taken to a doctor at Columbia Presbyterian where she was given the diagnosis. Lisa suffers from painful tightening of the limbs and often gets tremors. Her parents said she is delayed cognitively, and gets extra services at school.

Progress is being made with AHC. The foundation won a $250,000 grant from Pepsi and they have found the gene that causes the problem. 

The family, which is hoping to raise $400,000, have done fund-raisers with the Hudson Valley Renegades and hosted dinner dances.

"We have stepped it up over the past couple years," Paul Hodes said. "We struggle sometimes, funds are tight. It's hard to keep hitting the same people. 

Despite what she goes through, Paul said Lisa's spirits remain high.

"She is well known around town," Hodes said. "She's a very sweet kid."

For more information on AHC or to donate, visit www.ahckids.org. 

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We went through the same thing with our son who was also diagnosed with a.h.c.

So sad - Also its Columbia Presbyterian