By Jami Seymore, Morning News Reporter
ALBUQUERQUE, N.M. (KRQE) –
A New Mexico family is fighting to make a change for those diagnosed with a genetic disorder. Huntington’s is a deadly disease that affects the brain and right now, thousands of people in the state are at risk of getting it.
The symptoms of Huntington’s Disease are like ALS, Parkinson’s and Alzheimer’s, all at the same time. Caring for someone with it can be extremely taxing on families and for the Wilkes, it hits close to home. Savannah Wilkes’ journey with Huntington’s disease began before she was even born.
“My grandfather actually had Huntington’s but I never got to meet him,” said Wilkes. “He passed away the year that I was born.”
The disease has to be passed down from a parent. The children of someone with the disease have a 50-percent chance of inheriting it. That’s exactly what happened with Wilkes’ mom, years later.
“She knew she had the possibility of getting the disease as well, as well as her siblings, and it’s hard because most people don’t start showing symptoms until middle age. In her late thirties, we started noticing some changes. She noticed them, as well,” said Wilkes. “From what she told me, you can feel the changes that occur but you can’t really do anything about it. She started noticing she was agitated a lot, had a lot of anxiety. She started forgetting a lot of things and having outbursts that she didn’t know what was happening.”
As the disease took its toll on her mom, it impacted everything from her behavior to her movements. It also got hard for the entire family.
“It was really hard on my dad and my brother and I, just watching her go through that because she was kind of the heart of our family,” said Wilkes. “I internalized all of that and kind of took on the role of being a parent to my mom when I was 17 years old.”
She says her mom used fitness as a way to stay healthy as long as she could and wanted to remain independent. After an incident while driving though, Wilkes’ dad knew it was time to become a full-time caregiver.
“My mom was really stubborn. She never wanted anyone to help her. She always tried to do everything on her own and remain as independent as possible,” said Wilkes. “That was when my dad knew when he needed to quit his job and be with her full time.”
Wilkes’ husband, Chad, says it was hard to see the impact on their family. Though they lived away from her parents because of a career in the military, it still impacted their every-day lives.
“From an outside experience, it was hard to kind of grasp what was going on because at one point, you just think she can control her own things, her own mind, and one aspect, you’re realizing that she can’t,” said Chad Wilkes. “I was a new piece of the puzzle and part of Huntington’s Disease is they go through the same routine on a daily basis. If you switch that routine sometimes, it messes a lot of things up.”
The hardships of the disease took their toll on Wilkes’ parents and a few years ago, they both decided to take their own lives. Wilkes says depression is a common result of the disease and it’s important to let people know they’re not alone in the fight.
“My mom was my best friend. Both of my parents were super close. We’re a very close-knit family. She had struggled with depression because of the Huntington’s Disease. It’s very common,” said Wilkes. “I think that was part of the illness, mentally, she wasn’t able to understand how much she actually meant to us to be here, regardless of what we had to do to help her.”
Wilkes sees more family members from her mom’s side of the family battling the degenerative brain disease. She says it’s one of the hardest things to live through.
“Being surrounded by so much sadness and watching people go through things you can’t fix is one of the most lonely things that you can go through,” said Wilkes. “Even if you don’t know what to say to someone who is going through something like that, don’t say nothing.”
Eventually, Wilkes made the difficult decision to go through genetic counseling and get tested for Huntington’s. Although she tested negative for the disease, she says it’s still hard to find support in New Mexico.
“I am new to New Mexico. I haven’t lived here for a long time and what I found so far is that there are no support groups happening, currently, in New Mexico,” said Wilkes. “With Huntington’s Disease Society of America, they offer to do chapters and affiliates in each state. We currently don’t have one here that I’m aware of.”
As a new resident, she hopes to change that. Through social media challenges to spread awareness like #stopdropandplank4hd and creating a support system, she hopes to open the conversation for the thousands impacted by Huntington’s, whether they have the disease, themselves, or they’re a family member or friend.
“My goal is to create awareness here and I would really love to start a support group and just a have a place for people to go and feel safe and talk about what they’re feeling, because I know there’s people with Huntington’s Disease. It’s everywhere,” said Wilkes.
New legislation is making its way through Congress to help Huntington’s patients. The bill would allow patients to not have to wait two years for Medicare benefits, and instead, receive it once they qualify for disability. H.R.2770, the Huntington’s Disease Parity Act of 2019, was introduced in the House earlier this year, but has not yet passed in the House or Senate.