Help the Decker Family Navigate Megan's ALS Journey

Back in May, Megan noticed she was limping. "I assumed it was just a long day on my feet—but the limp never went away." By June, her doctor had her try physical therapy and began running tests. She suspected ALS and referred Megan to a neurologist, who shared the same concern. Soon after, she was sent to a specialist at UNMC. More tests followed, and in September she received the official diagnosis: ALS.

ALS (Lou Gerigs Disease) has an average life expectancy is 2-5 years. Megan's type starts in your feet and works it's way up, slowly attacking your body. "The doctors basically told us my wife is going to slowly he taken over by what would feel like frostbite over the next 2-5 years, and there's nothing we can do about it. Carrying that around and trying to make the best of it with your babies while you can is hard on all of us. So that's what we're trying our best to do, while doing everything in our power to prove them wrong. We are hanging onto any shred of hope we have that we can slow, pause, stop, and hopefully reverse this terrible disease through an enormous amount of prayer, a healthy diet, adapted mobility devices, specialized medical visits, medicine, and whatever else is needed to hang on to another day." Explains Joey .

"Since June, it’s been a roller-coaster of emotions, appointments, and uncertainty. We finally have a plan in place, and we’re focusing on enjoying the small moments with friends and family." Megan said. Her workplace has been incredible and has continued to support her even though she's had to reduce her hours. "Fatigue hits me quickly now, and walking long distances has become extremely difficult as my legs get weaker." Says Megan. She recently got an electric wheelchair so she can still go on walks with her family, visit the pumpkin patch, and enjoy days at the zoo—even if it looks different than it used to.

Megan says that this journey has changed a lot for their family. Joey has gone from sharing the responsibilities of caring for their two kids to carrying almost all of it—plus caring for her in many ways. "It’s been so much for him, and he’s doing everything he can. Our family and friends have been incredible, helping with doctor visits, watching the kids, or coming by to help when Joey is at work. We are so grateful" states Megan. But they worry about burning people out. "Asking for help has always been hard for me." Megan states.

That’s why we’re creating this GoFundMe. ALS is unpredictable and the costs add up quickly—medical appointments, mobility equipment, transportation needs, reduced work hours, and the ongoing adjustments they're learning to navigate. Any support will help relieve some of the pressure on their family and allow them to focus on their time together, on stability for their kids, and on making meaningful memories while they can.

Last year they found the home of their dreams, but with Megan's diagnosis, they need a single story home. 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.

"Our old home is under contract and we've found a new home that already has many handicap accessible features, but due to the sudden urgency of the situation, we're asking for help to prepare the home and our future once we're there." states Joey.

The flooring is all 20+ years old so for the sake of Megan and their kids respiratory health, that all needs replaced, walls and ceiling need refreshed and painted, door ways will need widened, kitchen island needs removed, and they need a washer & dryer, ideally able to accommodate larger loads of laundry.

They already have about 10k in medical bills, and assuming their insurance doesn't drop them or inflate their rate, they will still likely hit max out of pocket, and possibly have a large co pay.

"We're hoping to build a small rental property on the land next to our house to supplement our income since I no longer have time to focus on my day job of construction, and plan to drastically decrease my event business, so I can focus on taking care of my wife and kids needs as well as my own mental health while navigating all of this." Joey says.

They hope to make the house feel like their home as quickly as possible and functional for whatever the future has in store, so they can start focusing on making memories with the kids that will last, while they can, and cover the walls in family photos and memories they can hold onto. ❤️

By the time they move into this home, they will have moved 3 times in the past year, which has been physically and emotionally draining on all of them. They're really hoping to make this a home their family can call home through every chapter coming their way, and find the positive in all of this wherever they can.

What they need:

Handicap accessible vehicle.

A bath tub for the kids, and a fully accessible bathroom/shower.

A fenced in backyard so their dog Sophie can live there safely, & kids can play outside safely.

They would love to put a small playground in the back yard so they can watch the kids play from the back porch.

"We truly don't expect anything from anyone, and as a husband & father, I will do whatever it takes to keep my family as happy and healthy as I can for as long as possible. But my ego will never be more important than my wife and kids, so if anyone is able to help or wants to bless us in any way, we humbly thank you for your help navigating this." Joey states.

"Hug your kids. Hold onto your spouse. Life is too short." -Joey

Thank you for reading, supporting, sharing, or simply keeping them in your thoughts. Your kindness means more to them than they could ever express.

Lets all come together and help the Deckers prepare for the months and years ahead.

-Brody