With her mom and sister battling a fatal genetic disorder, and knowing there is a 50 percent chance that she will develop it as well, senior Kim DeMars has learned to never take anything for granted.
The members of the DeMars family are battling Huntington’s Disease, which causes the breakdown of nerve cells in the brain. According to the Huntington’s Disease Society of America, 30,000 Americans currently have the disease and 200,000 are at risk of developing it through heredity.
People generally develop symptoms between ages 30 and 50, and become worse over the next decade or two, with death coming from heart failure, pneumonia, or other conditions, according to the Huntington’s society.
The disease has been described as a mixture of ALS, Parkinson’s, and Alzheimer’s. There is no cure, but therapy can help to manage the symptoms.
People can change in a drastic manner with the disease and not be able to function as they had.
Several years ago her mom started developing anxiety and shakiness. They went to get a diagnosis in November 2016 when “she wasn’t acting like herself anymore,” DeMars said.
Her mom, Tracey, 52, had been a teacher at Pittsburgh public and Uniontown schools. She has had to retire due to her symptoms becoming more serious.
“She forgets things, and she’s not stable on her feet,” DeMars said. “She gets depressed, irritated, and anxious more easily.”
Seeing her mom battling the disease has taken a toll on the whole family.
“It changed my mom. It took away the mom I had when I was a baby,” DeMars said. “I think every day about it. I cry every day.”
DeMars also has had to take on a caretaker role for her mom. She had attended Charleroi High School, but switched to a cyber school to help get her mom to work last year. With her mom now retired, the family relocated and DeMars started at Baldwin.
Meanwhile, a month after her mom’s diagnosis, Kim’s sister, Ashley Pesi, 23, also was diagnosed with Huntington’s.
Pesi has not developed symptoms yet, but got tested to find out if her own daughter, 1-year-old Adrianna, might one day develop the disease. Because Pesi was diagnosed with Huntington’s, Adrianna, like Kim and all children of diagnosed parents, now has a 50 percent chance of developing the disease.
“I have already tested positive, which means my daughter will have a 50-50 chance,” Pesi, of McKeesport, said in an email interview.
Pesi knows this disease has really tested her sister’s relationship with their mother.
“It specifically affects my sister because she’s my mom’s caretaker,” she said. “Kim lives with my mom and has to be the one to look after her since my mom is symptomatic.”
That caretaker role affects Kim’s life in many ways.
“Some school days my mom begs me to stay home to be with her because she is upset. She feels better with me there,” Kim DeMars said. “When I’m in school she’ll text and I have to respond to her quickly or it becomes a big crisis for her.”
Before the diagnosis, her mom would lose jobs because of her anxiety, DeMars said. This led to the family moving around, making it tough for DeMars to develop strong friendships.
“If I go out with a friend, I have to call her every half hour because she gets overcome with anxiety if I don’t,” she said.
DeMars also has a 50 percent chance of getting the disease. Because she does not have any symptoms, she cannot get tested until she turns 18, which will be next June.
“I want to get tested as soon as possible but if I have it, I’m not going to want to go to college,” she said. “My Mom has a master’s degree, and she can’t even use it.”
“But if I don’t have it, I’ll have survivor’s guilt because my mom and sister have it.”
As if that were not enough, Kim DeMars has hydrocephalus, a buildup of too much cerebrospinal fluid around the brain. She had brain surgery in 2014 to drain the fluid, and she will need several more brain surgeries later in life.
She sees herself as very strong willed since she has overcome so much. She wants to be a zoologist and attend either California University of Pennsylvania, Mercyhurst, IUP, or Edinboro.