For Immediate Release
August 8, 2016
Contact: Erica Houskeeper
Essex Junction Couple Organizes 3rd Bike Ride to Raise Money for Daughter’s Rare Disorder
Registration for Del’s Ride now open for Sept. 18 event in Huntington
Essex Junction, Vt. – A local family and their friends are organizing the third annual Del’s Ride on Sept. 18 in Huntington to help raise funds and awareness for Alternating Hemiplegia of Childhood (AHC), a rare and painful neurological disorder with only 700 confirmed cases worldwide.
Ben Johnson and Katrina Sliwka, of Essex Junction, are parents of 7-year-old Delaney, who was diagnosed with AHC when she was 10 months old and epilepsy at age 4. There is no cure or 100 percent effective treatment for AHC, which is characterized by recurrent episodes of temporary paralysis, often affecting one side of the body (hemiplegia).
The family’s goal for Del’s Ride at Sleepy Hollow Inn Ski & Bike Center is to raise $20,000. All proceeds from the ride go to Cure AHC, a non-profit organization dedicated to finding a cure for AHC. The family’s first ride at Sleepy Hollow in 2014 raised more than $7,000, and last year’s event generated more than $15,000.
Del’s Ride will include mountain bike trail options ranging from 7- to 20-miles. New this year is a challenging 5-mile trail run as well as an expanded kids’ loop and activities. Registration is now open.
“The community continues to be incredibly supportive of this event, and we’re optimistic that we’ll reach our fundraising goal,” Sliwka says. “Delaney loves to ride bikes and explore the outdoors, so this event really reflects her spirit and enthusiasm. The challenging terrain for Del’s Ride takes some determination, but it’s also beautiful and a lot of fun, just like Delaney.”
Symptoms and a Diagnosis of AHC
Children with AHC can experience a range of paralysis, from simple numbness in an extremity to full loss of feeling and movement. The attacks may last for minutes, hours or even days and are normally relieved by sleep. The attacks of hemiplegia typically alternate from one side of the body to another, but it is not uncommon for one side to be more frequently affected, or for episodes to begin on one side, and then switch to the other.
AHC episodes are often associated with triggers that precede or induce the attack. Triggers for AHC episodes may include, but are not limited to, environmental conditions, such as temperature extremes, foods, physical activities, fatigue, and stress.
Two months before her first birthday, Delaney saw a neurologist and was diagnosed with AHC. The family worked with neurologists at Duke University, Montreal Neurological Institute and Hospital, University of Utah and UVM Medical Center. While there is no cure for AHC, the ATP1A3 gene was identified in 2012 as a leading cause of AHC and represents approximately 76 percent of those affected, including Delaney.
Delaney, who wears braces on both of her legs, is finishing kindergarten. The family is active and spends their weekends skiing, swimming, biking and being outdoors. Delaney has spent the last two winter seasons skiing at Smugglers’ Notch last winter through the resort’s adaptive ski program.
Sliwka is a counselor at the Howard Center, and Johnson, an avid mountain biker, is an assistant principal at Burlington High School. The couple lives with their three daughters in Essex Junction.
The rain date for Del’s Ride will be Sept 25. Sleepy Hollow Inn Ski & Bike Center and Cure AHC are sponsoring the event.
Registration for Del’s Ride is now open. To register, visit www.delsride.org.
**High-res photos are available on Dropbox. Please credit photographer Eric Hunter.