CHICAGO (NewsNation Now) — Mothers are speaking out about their experiences testing for Huntington’s disease, and oftentimes having to warn their children of the risks.
Linda Stollenwerk’s daughter, Mia, had Juvenile Huntington’s disease.
“Mia’s dad and I married in 1996. His mother had Huntington’s disease when I met him and I just remember thinking it was the worst disease ever. It tore our family apart,” Linda Stollenwerk said in a video.
Mia passed away in 2012 from Huntington’s.
“We woke up one night and Mia was literally beating us up with a lamp off our nightstand. And I looked at her and she looked at me and she was terrified and I knew the night that it happened, I said ‘This is not normal. There is something happening,’” said Stollenwerk.
But for one mother daughter-duo, Huntington’s brought them together — a meeting 40 years in the making.
After Donna McCoy’s sister was diagnosed with Huntington’s in 2018, she made the decision to get tested.
To her surprise, the results led to a medical revelation unlocking a family mystery.
“And everything kind of made sense after that point,” McCoy said. She tested positive.
She said it explained why her behavior started to change and motor skills declined. The emotional journey continued from there.
“We realized that my mother had Huntington’s disease and not Alzheimer’s,” said McCoy. “[I felt] denial and anger and bargaining and a lot of depression and anxiety.”
Despite the anguish, McCoy said she knew one person needed to know as soon as possible. The baby girl she gave up for adoption nearly 40 years ago, when she was just 19.
“I went to a home for unwed mothers for the summer and Julian was born in October and then I continued on with nursing school,” said McCoy.
Through Ancestry.com she found her daughter Jillian Kiel and sent her a message.
For the first time since birth, they connected face to face.
“I was giving her medical history, my past medical history, my family’s medical history because Jillian is a mother. And it was kind of like, ‘By the way we’ve got this. Sorry, I have HD,’” explained McCoy.
According to the Huntington’s Disease Society of America, “Huntington’s disease (HD) is a brain disease that is passed down in families from generation to generation. It is caused by a mistake in the DNA instructions that build our bodies and keep them running. DNA is made up of thousands of genes, and people with HD have a small error in one gene, called huntingtin. Over time this error causes damage to the brain and leads to HD symptoms.”
There is a 50/ 50 chance a parent with Huntington’s will pass it along to their child — and most people begin showing signs at 40.
That’s the same age Julian Keil was when she met her birthmother. Keil got tested right away.
“I was thinking down the line, like how am I going to tell my children? At what age should they get tested? When should I let them know about this for me?” Keil said.
Her results came back negative.
“We were relieved that it ended with Donna. That it wasn’t continuing down our line, but then of course then my thought turned to Donna and that this was something she was still going to struggle with,” said Keil.
The deadly disease led her to reach out to her biological daughter. But now she’s faced with another dilemma: managing the symptoms with no health insurance.
Matthew Ellison, founder of Huntington Disease Youth Organization, said many people with Huntington’s lack resources for mental and medical treatment.
“Services for young people… it’s really nonexistent. People don’t really know what to do with young people or what to say or how to develop services for them,” said Ellison.
Both he and his father have Huntington’s. His family struggled to cope with the disease, so he founded the nonprofit to serve as an educational tool for people around the world.
“It’s happening to young people all over the place who are just feeling very isolated and not really understood in that regard,” said Ellison.
In the U.K., laws exist to help people with Huntington’s receive assistance to access free health care. But that’s not the case in the U.S.
Louise Vetter, president and CEO of Huntington’s Disease Society of America, is currently working to provide patients with Huntington’s resources to better their quality of life in the U.S.
“We are working really hard to help families affected by Huntington’s disease to have better access to health benefits. So if you are determined disabled and you qualify for social security, disability insurance, you then have to wait two years before you can take advantage of Medicare benefits,” said Vetter.
The organization is backing the bipartisan bill called Huntington’s Disease Parity Act. It aims to use government money to close the benefits gap for people living with Huntington’s.
“That’s incredibly important because in two years, if you are already symptomatic, you are going to have symptoms that bring about decline and you won’t be able to pay for the care that could help your quality of life stabilize,” said Vetter.
Right now, lawmakers have not voted on this bill.