FARGO — Megan Osowski cherishes the good times with her dad, fishing with her tiny Barbie rod on Lake of the Woods, catching walleye after walleye while he went without a bite.
Her father, Tim Osowski, was an electrician with his own business, and when new shipments came in on the weekends, she’d help him count everything in the boxes.
“He was always so great at making me feel included and important in whatever we were doing,” she said.
But time with her dad was short.
Osowski, 23, a native of Grafton, N.D., lost him to the insidious affliction known as Huntington’s Disease when she was a high school freshman.
The brain disease causes deterioration of a person’s physical, mental, and emotional abilities; often described as having ALS, Parkinson's and Alzheimer's at once.
Not long after her father’s death, Osowski took on an advocacy role, including joining the National Youth Alliance of the Huntington's Disease Society of America.
On Saturday, May 22, she took part in a virtual walk with the HDSA’s Northern Plains Chapter with her own fundraising arm, “Team Osowski.”
She’s doing this, all the while not knowing what her own future holds.
Huntington’s is genetic, and Osowski lives every day knowing she has a 50% chance of inheriting it.
She could take a blood test to learn whether she has the suspect gene, but at this point in her life — with graduate school and a career in speech pathology ahead of her — she’s chosen not to.
“It's such a difficult decision, as there are no current treatments, there's no cure. So, you get left with this possibility of a positive test diagnosis and then… then what?
Growing up quickly
There are approximately 41,000 Americans with symptoms of Huntington’s Disease and more than 200,000 at-risk of inheriting it, according to the HDSA.
After being misdiagnosed at first with multiple mental illnesses, the correct answer for Osowski’s dad came around age 46, when she was nine.
But he’d been having telltale symptoms almost ten years prior, even before his daughter was born, including mood swings and balance problems.
There was no previous family history.
At work, Tim Osowski started forgetting how to wire outlets.
On job calls, there were reports he might be under the influence of alcohol.
“This disease, it does look like you've been drinking… but that's not the case at all,” Osowski said.
An only child, she said she had to grow up quickly.
When her dad could no longer work and required increasing amounts of care at home, the family developed a “wheel of caretaking,” Osowski said.
Her mother, Kerri, quit her banking job and became a school cook, where she could start early in the morning and be home by early afternoon.
Osowski would help her dad in the morning before she went to school, and her grandmother would fill in the gap after that.
There wasn't an option for a home health nurse.
“It just wasn't financially in the cards for us yet,” Osowski said.
That plan worked until an event would change the family’s course of action.
Osowski was making breakfast for her dad — his usual waffles, smothered with syrup, because people with Huntington’s often have trouble swallowing.
He began to choke and she was the only one at home with him.
“I remember thinking... that I was going to watch my dad die in front of my eyes,” she said.
She was able to smack him on the back to dislodge the food, but the experience was terrifying.
After that, the family would no longer care for him at home.
Processing grief through advocacy
Osowski’s dad couldn’t get the more involved care he needed in Grafton, so ultimately, he ended up moving to a nursing home in McIntosh, Minn., a two hour drive away.
Visits could happen only on Sundays, because Osowski was busy with sports and her mom was working.
“My mom was really, really, really great at still giving me a childhood,” Osowski said.
One particularly sweet memory was when she sang or played piano for her dad at the nursing home.
He couldn’t say much, but she knew what he was thinking.
“Just that gentle smile,” she said, pausing to compose herself, “to kind of show how proud he was of me.”
Timothy Ray Osowski died in 2013, at the age of 52.
Megan wishes her dad could see her now, raising money and awareness for Huntington’s.
She’s even advocating for the HD Parity Act, a bipartisan bill that would ensure that people diagnosed with Huntington's can bypass a two year waiting period and immediately qualify for Medicare to get them the help they need.
The work helps her process her grief and keep his memory alive.
“It just kind of grew into a way for me to channel all those emotions related to this loss,” she said.