NEED TO KNOW
Nebraska mom of 2, Megan Decker, thought her fatigue and limp were due to having just given birth and struggling with a return to work after maternity leave
After her doctor suspected ALS, tests quickly confirmed that she had the degenerative disease
The family is raising money to help them move to an accessible home, while also working to make memories for their children
A young mom who had just returned to work after maternity leave thought she was simply fatigued — but then doctors gave her “heartbreaking” news.
Megan Decker, 35, first noticed that she was limping in May, but tells PEOPLE, “I had recently returned to work from maternity leave and had had a long weekend on my feet. I thought the limp was just me not used to being on my feet, and that after I rested, it would get better.”
It “stopped hurting after a while,” but as the mom of two — she shares Ashton, now 2, and Emma, who will turn 1 on Dec. 28, with her husband Joey — explains, “I had just had a baby a few months before and figured my body was still healing from all of that.”
When the Nebraska mom took Ashton to his 2-year wellness visit in June, she mentioned the limp to the doctor, who “called in a favor” to get Decker an appointment with a neurologist. A month later, Decker’s primary doctor mentioned that she was concerned it could be amyotrophic lateral sclerosis — aka, ALS — commonly known as Lou Gehrig’s disease. “I knew very little about the diagnosis other than there was no cure,” Decker tells PEOPLE. “Everything I researched online was heartbreaking.”
Shannon Runge
Megan Decker with her children Ashton and Emma.
ALS is a rare degenerative disease that causes progressive paralysis of the muscles. Patients first experience twitching or weakness in a limb, as Decker did. The disease affects the nerve cells in the brain and spine that control muscle movement, so patients slowly lose their ability to speak, eat, walk, and breathe independently, per to the Mayo Clinic. There’s no cure for ALS, and people usually live three to five years after diagnosis, according to the Muscular Dystrophy Association. However, some patients can live decades.
Joey, 35, recalls the moment his wife told him what doctors suspected. “My wife walked in … out of nowhere, crying a deep, broken cry. I didn’t know what was going on, but when I saw her, I dropped my [building] tools, stood up, and just held her tight for a few minutes while she found the space between deep breaths to fit the words into. Once she told me what the doctor thought was going on [ALS]), my heart immediately fell through the floor. Everything we’ve spent our entire lives working toward crashed beneath us in that moment.”
Decker says they “cried for hours that first day. We then kept praying that it was something, anything, else.”
More tests led to Decker being officially diagnosed with ALS on Sept. 2. “Hearing the official diagnosis was just as heartbreaking,” Decker tells PEOPLE. “There are days when life feels normal and I forget for just a few minutes that there is something wrong, and then it will hit me again. We’ve really had to accept our emotions in our house because at any given moment me or my husband might be crying.”
The family has started a GoFundMe to help them pay for the mounting medical bills — and for a necessary move to a home without stairs. As the fundraiser explains, “They’re currently renting a single-story home from a friend of theirs but it isn’t handicap accessible, and they’re getting to a point where that’s a functional necessity.”
Liz Young
Megan Decker with husband Joey, and children Ashton and Emma.
Decker is already struggling to walk. “I am currently using a walker to get around short distances, and if I’m going longer distances, we have an electric wheelchair.” The wheelchair has allowed her to still be present with her family at events like “the pumpkin patch and parades.” As the disease progresses, they plan to rely on adaptive equipment, like “voicebanking,” which will allow her to “still be able to communicate with my family and it will be in my ‘voice’ even if it gets to the point that I can no longer speak.”
Never miss a story — sign up for PEOPLE’s free daily newsletter to stay up-to-date on the best of what PEOPLE has to offer, from celebrity news to compelling human interest stories.
In the meantime, the young couple is trying to help their children cope. “Both of our kids are too young to understand what is going on,” Decker says, explaining they tell their toddler “in ways he will understand: ‘Mommy is just sad right now, and that’s okay’ or ‘Mommy’s legs are feeling weak today so Daddy gets to carry you.’ “
But as Decker shares, her disease is progressing quickly, and “the diagnosis and treatment coming from the doctors is very bleak.” She’s been told, “I will likely not be walking within a year and would guess my life expectancy is three.”
Shannon Runge
Megan Decker with husband Joey.
“My husband and I are supposed to be starting our lives together, not trying to figure out how to help me be more comfortable in the next three years as I slowly lose all function of my body, while my mind is still there. It’s not something anyone should have to face. I’m just so thankful for our amazing support system throughout all of this.”
Decker explains that she’s trying to keep positive as much as possible. “I think the hopelessness can contribute to a faster decline, and I want as much time with my kids as possible so I’m focusing on the good. I also don’t want them to remember me as bitter or angry, so I’m going to focus on the good and be grateful. There are days this is hard, but that is my goal.”
The family will be setting up a donated playground in their yard, she says, so “I can go watch them from our porch and just be involved that way.”
And Joey shares, “I’m still a broken man, and I’ve accepted that I probably always will be, but Ashton and Emma deserve the best life possible, and our time with mommy may be limited.”
“We just want to make as many memories as possible with our children while mommy is still here,” he says, “so we can fill our home with reminders that she loves these amazing kids more than they could ever know, while fighting our hardest to keep her around to remind them herself.”
Read the original article on People