Local Couple Organizes Bike Ride to Raise Money for Daughter’s Rare Disorder

For Immediate Release

Contact: Erica Houskeeper Erica Houskeeper Communications 802-498-5495 ehousk@gmail.com

Essex Junction, Vt. – A local family and their friends are organizing Del’s Ride, a bike ride in August 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 6-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).

Del’s Ride will take place at Sleepy Hollow Inn Ski & Bike Center in Huntington on Aug. 30 at noon. The event will offer two mountain bike trail options ranging from 5 to 25 miles, as well as a shorter loop for kids. Sliwka and Johnson organized the ride with the help of their closest friends, Jared and Megan Poor and Josh and Michelle Edelbaum.

The family’s first ride at Sleepy Hollow in 2014 raised more than $7,000 for AHC research. All proceeds from this year’s ride will go to Cure AHC a non-profit organization dedicated to finding a cure for AHC.

“The trails for Del’s Ride are really challenging, and it really speaks to what everyday life is like for Delaney,” Sliwka says.

Symptoms 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.

Living with AHC

Two days after she was born, Delaney was admitted to the NICU after experiencing her first seizure while breastfeeding. No other seizures happened at the hospital, and she was sent home.

“At three weeks, Delaney started having abnormal eye movements, and at six months she started to experience paralysis on both sides of her body,” says Sliwka. “The paralysis would always last at least until she slept. In one particular incident, she remained paralyzed for eight days on her right side.”

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 her first year of kindergarten. Being in school has given the six year old more confidence. The family is active and makes a point to spend their weekends skiing, swimming, biking and being outdoors. Delaney started skiing at Smugglers’ Notch last winter through the resort’s adaptive ski program and loved every minute.

“I’m so happy to see that she recognizes that she can ask for help,” says Sliwka, who also has two other daughters, Mara, 3, and Nina, 1. “Delaney loves to ride bikes, play with her sisters, ride her adaptive bike, and play outside.”

Sliwka is a counselor at the Howard Center and Johnson, an avid mountain biker, is an assistant principal at Burlington High School. The couple married ten years ago and live with their daughters and puppy, Tony.

What would she like people to know most about Delaney?

“Delaney is persistent and determined, and she loves to have fun and wants to be involved,” Sliwka says. “She is also the hardest worker I’ve ever known.”

The rain date for Del’s Ride will be Sept. 20. Sponsors for Del’s Ride include Sleepy Hollow Inn Ski & Bike Center, Cure AHC, Earl’s Cyclery, Citizen Cider, and Green Mountain Designs. To register for Del’s Ride, visit www.delsride.org.