Mom Thought She Was Just Tired from Parenting 2 Kids Under 2. Then Her World Came 'Crashing' Down (Exclusive)

After experiencing fatigue and a limp, Megan Decker, a 35-year-old mother of two young children in Nebraska, received devastating news. Initially, Decker attributed her symptoms to the demands of caring for her two children, Ashton, 2, and Emma, who will soon be one, along with her recent return to work after maternity leave.

That said, the reality is a bit more complicated. after consulting with her doctor, tests revealed that she has amyotrophic lateral sclerosis (ALS), a progressive degenerative disease. Now, the family is focused on creating lasting memories for their children and raising funds to move into a more accessible home.

Decker first noticed a limp in May. Speaking with PEOPLE, she explained, "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.” As a mother of two, with a baby just a few months old, she assumed her body was still recovering.

During Ashton’s 2-year wellness checkup in June, Decker mentioned the limp to the doctor, who expedited an appointment with a neurologist. A month later, her primary doctor voiced concerns about the possibility of ALS, also known as Lou Gehrig's disease. Decker admitted to PEOPLE, “I knew very little about the diagnosis other than there was no cure,” adding that everything she researched online was heartbreaking.

ALS, as defined by the Mayo Clinic, progressively paralyzes muscles by affecting nerve cells in the brain and spine that control movement. The Muscular Dystrophy Association reports that while some individuals live longer, the typical life expectancy post-diagnosis is three to five years. Patients gradually lose their ability to perform basic functions, such as speaking, eating, walking, and breathing independently. Initial symptoms often include twitching or weakness in a limb, as Decker experienced.

Joey, Decker’s husband, recounted the moment his wife shared the doctor’s suspicions. He told PEOPLE, "My wife walked in ... out of nowhere, crying a deep, broken cry... 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.”

The diagnosis was officially confirmed on September 2nd. Decker shared that the diagnosis was just as heartbreaking as the suspicion. She explained that some days feel normal, but then the reality hits again. The couple is allowing themselves to feel their emotions, acknowledging that either of them might be crying at any moment.

The family has established a GoFundMe campaign to help cover mounting medical expenses and facilitate a move to a home without stairs. Their current rental home isn't handicap accessible, which is becoming a necessity.

Decker now uses a walker for short distances and an electric wheelchair for longer outings. The wheelchair has allowed her to continue participating in family activities. As the disease advances, they plan to utilize adaptive equipment like “voicebanking” to preserve her ability to communicate with her family in her own voice.

Decker says that they are telling their toddler that “Mommy is just sad right now, and that's okay’ or ‘Mommy's legs are feeling weak today so Daddy gets to carry you.’”

Decker has been told that she will likely not be walking within a year and estimates a life expectancy of three years. She is trying to remain positive, believing that hopelessness can accelerate the disease's progression. The family is planning to set up a donated playground in their yard so that Decker can watch her children play from the porch.

Joey stated that he wants to make as many memories as possible with their children. He added, "We just want to make as many memories as possible with our children while mommy is still here," emphasizing their commitment to filling their home with reminders of her love and fighting to keep her around as long as possible.