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Lake Zurich Family Finds Hope in Paulus Park Walkathon

Middle School North student afflicted with rare disorder, alternating hemiplegia of childhood (AHC).

 

A Lake Zurich family is organizing the Seventh Annual AHCF Walk this Sunday, Sept. 30, at Paulus Park. Gene Andrasco serves as treasurer of the Alternating Hemiplegia of Childhood (AHC). His daughter, Kiley, is a sixth grader at Lake Zurich Middle School North and is afflicted with the disorder. 

Funds raised at this event benefit the Alternating Hemiplegia of Childhood Foundation's efforts to continually fund medical research to find the cause and cure for AHC. 

“Recent scientific findings related to the cause of AHC give us hope, but we know there is long way to go to find a cure,” Andrasco said. 

AHC is a rare neurological disorder. It is so rare that there are only about six known cases in the Chicago area and just 800 diagnosed cases across the globe, Andrasco said. Children with AHC are afflicted with seizures and are often misdiagnosed.

Kiley is in a special education class at Middle School North. Due to AHC seizures, Kiley has a nurse with her at school to administer emergency medicine.

“We are very fortunate she can walk somewhat. She can get around and be semi-independent. We do want to her get her involved in as many things as possible,” Andrasco said.

Kiley has joined the Gems cheerleading team which is a special needs program run by Ultimate Athletics in Wauconda.  She also participates in the SNAP (Special Needs Athletic Program) and has participated in the Regional Special Olympics at Lake Zurich High School.

See: Kiley Smiles Through Rare Disorder.

Recently, researchers at Duke University and the University of Utah have identified the genetic mutation that is one of the key causes of the disorder. The AHCF Chicago Walk and a Pepsi Refresh grant funded that research.

“We know there is a long way to go to find a cure for AHC, but this is an important step and a reason to continue our fundraising efforts,” Andrasco said.

The walk was founded by the family of Emily Platt, a 10-year-old in Mt. Prospect, who is afflicted with AHC.

“The walk goes from 10 a.m. to 1 p.m. so people can come out and start at any time.  At the walk we will have Scoopee from Culver's giving out frozen custard.  We also received donations from many local businesses to make gift baskets that we will raffle off,” Andrasco said.

See the flyer for more information. 

 

 

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