Algonquin Mother, Son Courageously Face Future with Huntington’s Disease
May is Huntington’s Disease Awareness Month and to help raise money for the cause, Algonquin resident Danielle Perrott has coordinated a Locks for a Cure event. Both her husband and mother-in-law have been diagnosed with the disease.
When Algonquin resident Pam Perrott, was diagnosed with Huntington’s in 2008, her son, Charles, figured he should get tested for the neurodegenerative genetic disorder, too.
“We knew there was a 50/50 chance he could have it and we wanted to make sure before starting a family what his outcome would be,” said Danielle Perrott, the wife of Charles.
Two years ago, Charles Perrott also tested positive for the disease for which there is currently no cure or treatment.
His diagnosis prompted Danielle to begin raising awareness and funds for Huntington's research.
This past weekend, she spearheaded the Locks for a Cure fundraiser with the help of Clip Joynt hair salon in Crystal Lake, where family and friends could get blue hair extensions for $20 to raise awareness about Huntington’s disease.
Half the proceeds from Sunday’s fundraiser, which lasts through May 31, will go to sponsor Team Perrott in the Huntington's disease Walk for a Cure May 22 in Wheaton.
All proceeds from the Huntington's disease Walk for a Cure, which coincides with Huntington's Disease Awareness Month, go directly to the Huntington's Disease Society.
This is the second year the Perrotts are participating.
Those diagnosed with adult-onset Huntington's disease, like the Perrotts, usually develop symptoms in their mid 30s and 40s. It is a hereditary, degenerative brain disorder that results in a loss of cognitive, behavioral and physical control, and for which, presently, there is no treatment or cure. Symptoms include rigidity, slow movements and tremor.
Neither Charles nor his mother, dwell on the disease. Instead they use it as motivation to live life to the fullest.
“In my day-to-day life I try not to think about it,” said Charles, who is 27 years old and has yet to show any symptoms. “Some people say, ‘It’s always on my mind.’ But I don’t want that. I try to keep my mind occupied.”
Pam, who is a longtime community volunteer and member of the Algonquin Lioness Club added, “Knowing and living with this disease, just makes me appreciate what I have and to physically and mentally take care of myself.”
She describes Huntington’s as “a closet disease.”
“Not too many people are aware of how devastating this has on oneself and their families,” she said. “People can be misdiagnosed who have this. So unless the public is educated on this disease, they could continue living a terrible life.”
Both mother and son laud Danielle’s determination to fight the disease.
“I back her up 110 percent,” Charles said. “This is a great cause that more people need to be made aware of.”
“Danielle has made it her quest to make sure everybody is going to get educated on Huntington's disease,” Pam said. “I am so proud of her for standing by my son and going into their marriage knowing what her challenges in the future she might be up against. This is just the beginning of what she has set out to accomplish.”
On the Team Perrott’s Walk for a Cure fundraising webpage, Danielle has placed a blue rose, which she said has historically been suggested to be able to grant wishes.
“It symbolizes mystery and the longing to attain the impossible, much like our search for a cure for HD,” she said. “The blue rose, much like HD, is the result of a genetic alteration."
Pam explained that the design of the blue rose is to encourage people to know more about Huntington's disease.
“We will wear it proudly,” Pam said.
Keep up with the Perrott’s fundraising by visiting www.firstgiving.com/fundraiser/danielle-karlson/teamperrott.