On Saturday, Sept. 17, Ed Clark of Tewksbury will, for the sixth time, be participating in the Team Hope Walk to benefit The Huntington’s Disease Society of America.
For many local families the walk means hope for a cure and, for Ed, that cure can’t come soon enough.
In 1998 Clark’s wife, Debbie, lost her 15-year battle with Huntington’s Disease. Today, their 25-year-old daughter, Krystal, is fighting that very same battle.
Diagnosed with a fast moving, juvenile form of the disease at age 18, Krystal is one of far too many people that Clark has seen suffer with Huntington’s.
Along with his wife Debbie, Huntington ’s disease has claimed three of her siblings and both her mother and grandmother. Sadly, it was Clark himself who began to recognize the signs of Huntington’s in his daughter, Krystal, when she was only 15. After three years of tests the diagnosis of Huntington’s simply confirmed what Clark already knew.
“I started seeing signs of the disease when she was 15,” remembered Clark, “but it took several years to actually have her diagnosed.”
A single father for the past 13 years, Clark credits his late wife with giving him the courage and strength to fight the battle against Huntington’s Disease.
“Debbie was a very brave woman,” he explained, “she participated in all sorts of research studies for Huntington’s Disease. Some of her contributions have helped to make great strides towards finding a cure.”
Even after her death Clark’s wife continued to fight the disease. “Debbie made a few things very clear before she passed away,” mentioned Clark, “and one was that her body was to be donated for research.”
Well aware that her mother, aunts, uncles and other family members have lost their battle with Huntington’s Disease, Krystal continues to fight the disease while her father helps to raise awareness and funds for a cure.
“Krystal is very in tune with the situation,” explained Clark. “She knows the disease and how it works but she does not dwell on it.”
Creating “Team Krystal” and walking for The Huntington’s Disease Society of America is about raising awareness of the disease as well as chance to spend time with other families who have been touched by Huntington’s. “Everyone at the walk is happy and hopeful,” explained Clark. "You will not see a sad face in the crowd.”
For Clark the day of the walk is one of both celebration and tribute.
“For me participating in the walk is a nice little tribute to my wife,” he mentioned, “there are so many families walking for loved ones but, in my little corner, it’s all in Debbie’s memory.”
You can learn more about donating to Team Krystal by visiting www.firstgiving.com/fundraiser/edward-clark3rd/lowell-team-hope-walk