Ohio Family Focuses on Making Memories Following ALS Diagnosis

You can’t always anticipate the challenges life throws your way. For Megan Gordon, life changed drastically this year when her husband, Sean, was diagnosed with ALS, or Lou Gehrig’s disease. In a matter of months, Sean went from having full mobility to becoming a full-time wheelchair user. Now, Megan is on a mission to find a wheelchair accessible van so Sean can get out and make memories with their three children.

ALS is a progressive neurodegenerative disease that impacts nerve cells in the brain and spinal cord. Essentially, the brain loses connection with the muscles, affecting a person’s ability to walk, talk, eat, and breathe. According to the ALS Association, more than 5,000 people are diagnosed with ALS every year.

While the disease has already affected Sean’s ability to walk and speak in such a short amount of time, Megan says his personality continues to shine through.

“He loves to watch football, his favorite team is the 49ers. He enjoys fishing. He’s a pretty laid-back, go with the flow kind of guy. He’s got a good sense of humor, which I think has helped through all this, too. You can definitely tell he hasn’t lost his sense of humor through it all,” she said.

The family relies on their Kia to get around, but Megan admits that the process of transferring Sean to and from the car is becoming both physically and mentally exhausting for him. The hassle of transportation discourages him from leaving the house, meaning he misses out on memories like seeing their son play in the marching band on Friday nights or hitting the road to go sightseeing.

“He enjoys taking road trips. We would literally get in the car and just drive for an hour or two hours, just because. He doesn’t really enjoy doing that right now because he gets that guilty, bad feeling that he’s too much, that the situation is too much of a pain for me to do,” she said.

Megan feels that having their own wheelchair accessible vehicle would allow Sean to start enjoying life’s little moments again.

She says, “It’s not only [about] making it easier for me to get him from Point A to Point B, to doctor’s appointments and stuff like that, but I think it would be a lot easier on him to be like, ‘Let’s go take that road trip.’”

When asked where they would drive first in their accessible van, Megan said, “My kids have these Bucket Lists and there’s different road trips, like there’s an ice cream road trip and there’s one through West Virginia, so it would probably just be a random ‘Let’s just go enjoy the scenery’ trip, especially with fall coming in soon.”

Although more challenges may lay in the road ahead for the Gordons, they have their sights set on what’s most important: enjoying their time together.

“I think it’s just [about] being able to get him out and having the kids spend what time they have left with him,” said Megan. “Now is the time to make the memories they can.”

Click here to learn more about Sean’s story and the family’s fundraising efforts.

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