Donations support Marie-Eve so she can be strong for her family

It wasn’t until her grandfather died that Marie-Eve and her family learned he had been living with Huntington’s disease – and that they might all have it too.

Marie-Eve, who works at Industry Canada, began her career in the federal government three years after her grandfather’s death. Things were going well for Marie-Eve, but her mother started experiencing some strange symptoms. She would turn off her computer at work for no apparent reason and was becoming increasingly forgetful.

As the family found out, Huntington’s is a neurodegenerative disease leading to dementia, passed down through genetics. After discussing it with family members, Marie-Eve’s mother went for the predictive genetic testing.

The test results revealed that her mother had the disease. Marie-Eve was very concerned for her mother and was now one step closer to actually having to live with Huntington’s herself, since children of people living with the disease have a 50% chance of inheriting it. Slowly she was preparing herself for this seemingly inevitable fate.

“I got in touch with my local chapter of Huntington’s Society of Canada to get tested. Part of the process is to do counselling pre-testing and post-testing to help cope with the news, so I started meeting regularly with a psychologist,”  Marie-Eve said.

When her psychologist deemed her ready to take the test, she did.

The result came back in Marie-Eve’s favour: She did not have Huntington’s disease.

“Shockingly, I wasn’t satisfied. I wasn’t happy, nor was I relieved. Instead I was overcome with guilt that my psychologist referred to as ‘survivor guilt’. Out of my mom and her seven siblings, five of them tested positive for Huntington’s. At that moment, more than ever, I felt like I had to do something to help them.”

Marie-Eve explored what else the Huntington’s Society, a HealthPartners member organization, had to offer. She began attending information sessions and informal caregiver meetings, through which she learned invaluable information about the disease and ways to deal with it.

While Marie-Eve does all that she can, Huntington’s is still a degenerative disease and there is only so much that can be done. Sadly, Marie-Eve must watch as the disease slowly robs her mother of the ability to do simple every-day tasks over time.

Marie-Eve finds herself mourning the loss of her mother’s independence.

However, she volunteers regularly with the Huntington’s Society, helping to provide valuable services that help deal with this disease. She helps raise money by participating in races, by selling amaryllis bulbs (the Huntington’s Society symbol) or by helping people living with the disease and their family members.

“This summer my mom went away to a camp for a week to give my dad a break, since she needs his assistance at this point,” Marie-Eve says as an example.

Thanks to the GCWCC and its generous donors, who support agencies like the Huntington’s Society, families like Marie-Eve’s are able to access the support they need.