NEED TO KNOW
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Nebraska mom of two, Megan Decker, initially attributed her fatigue and limp to just having given birth and adjusting to returning to work after maternity leave.
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After her doctor suspected ALS, tests confirmed the diagnosis of the degenerative disease.
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The family is raising funds to move to a more accessible home, while also trying to create lasting memories for their children.
A young mother just back to work after maternity leave thought her weariness was nothing more than ordinary exhaustion, but then came the “heartbreaking” news from doctors.
Megan Decker, 35, first noticed her limp in May. She shared with PEOPLE, “I’d just returned to work and had a long, busy weekend on my feet. I assumed the limp was just my body getting used to being active again, and that a little rest would sort it out.”
It “stopped hurting after a while,” but as a mom of two—she has Ashton, 2, and Emma, who turns 1 on December 28—she figured, “I had just given birth a few months ago, and my body was still healing from that.”
When she took Ashton for his wellness check in June, she brought up her limp to the doctor, who arranged for her to see a neurologist. A month later, her primary doctor expressed concern that it might be amyotrophic lateral sclerosis (ALS), commonly referred to as Lou Gehrig’s disease. “I didn’t know much about it, other than the fact that there’s no cure,” Decker said. “Everything I read online was devastating.”
ALS is a rare disease that causes progressive paralysis, often starting with twitching or weakness in a limb. It affects the nerve cells controlling muscle movement, leading to loss of abilities to speak, eat, walk, and breathe independently, according to the Mayo Clinic. With no cure available, people typically live three to five years post-diagnosis, although some do survive for decades.
Joey, 35, remembers the moment Megan shared the doctor’s concerns. “She walked in, crying deeply, and I was taken aback. I held her tightly as she tried to catch her breath and find the words. When she told me about the ALS suspicion, my heart dropped. Everything we had worked for felt like it was crumbling.”
They spent hours crying that day, hoping it was “something, anything else.”
More tests led to her official diagnosis on September 2. “Hearing that confirmation was equally heartbreaking,” Decker recalled. “Some days feel normal, and I forget that anything is wrong, but then it hits me again. We’re all trying to cope with our emotions, as we may each find ourselves in tears at any moment.”
To help cover escalating medical expenses and the need to move to a one-level home, the family has set up a GoFundMe. The campaign notes that they currently rent a single-story home that isn’t equipped for disabilities, and they are reaching a point where accessibility is necessary.
Decker is already having difficulties with mobility, using a walker for short distances and an electric wheelchair for longer outings. This equipment allows her to participate in family events like visits to the pumpkin patch or parades. As her condition progresses, they plan to adopt additional adaptive technologies, like voice banking to facilitate communication even if she loses her ability to speak.
While the kids are too young to fully grasp the situation, Decker talks to them in simple terms: “Mommy is feeling a bit sad right now, and that’s okay,” or “Mommy’s legs are weak today, so Daddy gets to carry you.”
However, as she notes, the progression of her illness is alarming. “I’ve been told I likely won’t be walking within a year, and they estimate my life expectancy is three years.”
“My husband and I should be embracing our lives together, not figuring how to make me comfortable as I gradually lose all my physical abilities while my mind remains intact. It’s a situation no one should have to confront. I’m incredibly grateful for the amazing support we’ve received during this challenging time.”
Decker is striving to maintain a positive outlook, recognizing that despair might worsen her condition. “I want to make lasting memories with my kids, so I focus on the positivity. Some days it’s incredibly tough, but that’s my objective.”
They plan to set up a donated playground in their yard to allow her to watch her children play from the porch and remain involved that way.
Joey expressed, “I’m left in pieces and I acknowledge I probably always will be, but Ashton and Emma deserve a beautiful life, even if our time with their mom is limited.”
“We want to create as many memories together as we can while she’s still here, filling our home with reminders of her love for them,” he added.
Read the original article on People.
