Lindsey Pelaez, the Chief Strategy Officer for Village Green Related Properties, wanted to help raise awareness for the disease when she learned that Nancy Peterson, one of their property administrators, was the caregiver for her husband and daughter, both with Huntington’s Disease.
“I knew nothing about Huntington’s Disease until I saw what Nancy goes through on a daily basis. This is a disease that nothing touches; there is no known cure. There is no drug on the market,” Pelaez said.
Everyone has the Huntington’s Disease gene. However, those who inherit the expansion of the gene will develop Huntington’s Disease and face a 50/50 chance of passing the expanded gene onto their children. These numbers can cause a great deal of stress within families, as they struggle with the realities of being at risk or gene positive while also caring for someone they love who has developed symptoms.
No one understands the impact of Huntington’s more than Peterson, whose daughter Molly was diagnosed on her 25th birthday. Peterson was already familiar with the symptoms—ranging from personality changes to an unsteady gait and difficulty swallowing—since her husband had started displaying them almost ten years prior.
“I saw the symptoms. I tried to pretend it was something else, but I knew in my heart what it was. My daughter was plagued with this horrific disease,” Peterson said.
Already aware there was no cure for the disease, Peterson chose to take Molly to Wake Forest, where the first Huntington’s clinic in North Carolina had opened. She recalls all the details of their first visit as she brought in her young daughter. As she looked around the room at the mostly elderly patients, Peterson felt like she was looking into her daughter’s future… and she hated what she saw.
In an effort to explain Huntington’s Disease to the public, it has been likened to a mixture of Alzheimer’s, Parkinson’s and ALS. However, the way the disease manifests in each person can vary greatly. Peterson describes her husband the way he was when they first met through their 47-year marriage—a perfect gentleman. Now, he’s given to strange outbursts and mood swings that make their lives difficult at best.
“It’s the saddest thing to watch him change right in front of my eyes,” Peterson said.
On the other hand, Molly’s changes have been predominantly physical. At first, there were falls that meant black eyes and stitches. Then it became more difficult to communicate. At 36, Molly is now bed-ridden. Her indomitable spirit, however, is fully in tact. It’s a small consolation for Peterson, but a blessing she happily accepts.
“I don’t just say this because she’s my daughter: Molly is a brave and beautiful woman. It’s astounding to me that she’s mine,” Peterson said.
Peterson has met other families dealing with Huntington’s through her work, and those connections have helped her feel less alone.
“We have cared for people who have Huntington’s Disease. We offer our assisted living services to them, but that’s all we can do,” Pelaez said.
Three years ago, Pelaez realized they could help in another way, by utilizing the 100-acre fenced property on which the complex sits. By opening it up and inviting community members to hike a 3 kilometer stretch, they could actively support the Peterson family by helping others understand the struggles they and others in their situation face. The first year, Molly’s father pushed her wheelchair the entire path.
The event serves to raise awareness while also raising money to support the North Carolina chapter of the Huntington’s Disease Society of America. Clinical research and trials have been gaining momentum since the Huntington’s Disease gene was isolated in 1993.
“Today, patients and their families have cause for hope; a new era of discovery is unfolding in research on Huntingdon’s Disease,” said owner of Village Green Related Companies, Dr. Franklin Clark.
Genetic testing also allows family members to decide whether or not to test for the expanded gene—a difficult and highly individual decision. Typically, individuals do not become symptomatic until between ages 30 and 50, which can generate a lot of anxiety as at-risk family members weigh the benefits of knowing against the terminal diagnosis it represents.
For Peterson, the Hike for Huntington’s has improved her life by putting her story out into the public eye.
“It’s all out in the open, and my work and community accept me for the family I have,” Peterson said.
Steadily, the event has grown over the past two years, and this year Pelaez expects it will continue to expand. Schools, businesses and organizations are encouraged to put teams together and come out, as well as individuals from the community. As in years past, there will be plenty of food, activities and family-friendly entertainment for everyone.
“One person or fifty people can come out,” Pelaez said. “It’s a fun, light-hearted event, but the money we raise has a serious effect.”
For more information or to register for the third annual Hike for Huntington’s, visit www.CarolinaInnNC.com or call 910. 829.0100.