Help Sean with a wheelchair accessible van

Sean and I met when I was 17. From day one, I knew this would be the man that I would eventually go on to marry! After 8 long years, as we were laying in bed, he asked me to grow old with him! I said yes, and in 2003, barefoot on the beach, we exchanged our vows. Never in my wildest dreams did I ever imagine that we might not make it to see our 20 year wedding anniversary!

In the late spring, early summer of 2020, Sean began having issues with his sinuses and changes in his speech. Knowing he always had horrible allergies, we wrote it off as a bad allergy season. Then, a couple months later, he was having issues swallowing his pills and certain foods. Again, we wrote it off as an issue he had in the past, having to have his esophagus stretched due to issues with GERD. We figured it was going to be another trip to the gastroenterologist. As we waited for this appointment, Sean began experiencing weakness in his arms and hands...unable to hold heavier objects, open bottles, dropping things, etc. His PCP began running blood work and doing any test she could think to try. Everything was coming back normal.

Finally, in December of 2020, she suggested we get into a neurologist. With Covid still lingering, we were unable to get him in until Feb. 4, 2021. We went to the appointment and spent the next hour talking about his symptoms, when they began and how he'd progressed since May. We left that appointment with no answers, but a list of testing to be completed and a follow up in March. After a surgery to remove a hearing implant, 2 MRIs, a barium swallow test and an EMG, we returned to the office on March 4th for a diagnosis neither of us were expecting. At just 48 years old, we were told Sean had ALS...Lou Gehrig's Disease.

ALS is a nervous system disease that weakens the muscles and impacts a person's physical functions. It is very rare and only affects about 20,000 people per year. There is NO cure and only 2 approved medications that help in slowing the physical progress. Along with this devastating news, we learned that Sean's onset is considered a bulbar onset. Meaning the disease starts by affecting the motor neurons in his head...difficulties with speech and swallowing food/drink. He started his battle with this disease where most ALS patients end. I think the only thing more difficult than getting the diagnosis was telling our children. Knowing they would have to watch their dad progress and physically watch him decline is something that I had no idea how to prepare for.

My husband was still walking and eating when we walked into that office on March 4th and received this diagnosis. Now, just 4 months later, he relies solely on a wheelchair to get around, his speech has come down to spelling words (which his letter pronunciation is get more difficult) and he is on a 12-hour continuous feed through a tube while he eats. He has lost close to 80 pounds!

One of the medications approved to slow the physical progress for ALS is Radicava. Radicava is an IV infusion medication that is administered every 2 weeks, for 2 weeks. Monday through Friday, every 2 weeks, we go to the infusion center and wait while the infusion runs, hoping with each infusion that it helps with the muscle atrophy.

His muscles still continue to atrophy, lose strength and have increased spasticity. It is getting harder on me, physically, to get him in and out of our vehicle. Some days, he is so stiff, that it hurts bending his legs to get him in. I went from working full time, to staying home to be his full time caregiver, working only every other weekend. Having a wheelchair accessible van would make life a lot easier on the both of us. Along with his biweekly infusions, we go up to Cleveland Clinic main campus at least 2 times a month for one appointment or another.

Any help would be appreciated. I've learned over the last 4 months, that I am surrounded by wonderful people and that has been what has kept our spirits up. If you aren't able to make a donation, please share Sean's story and send prayers! Prayers for him, the kids and prayers that, someday soon, there will be a cure for this horrible disease!