Evan started having the first hint of symptoms during the Summer of 2021-Fall of 2021. He was diagnosed early 2022. He now has a team of doctors at the Sean M. Healey and AMG Center for ALS at Mass General Hospital. Evan is now fully dependant on a walker to get around the house and quick errands and a wheelchair for longer outings. He describes his right hand as “basically useless” and his left hand and right leg is getting weaker. If you look closely at his arms you will most likely see the twitching (fasciculations) of his muscles. His legs are very stiff and he experiences clonus and spasticity regularly. Just today, I had to call the fire department as he fell getting out of bed and couldn’t bend his legs to get up. They got him up but it still took over TWO hours for his knees to finally bend.
Evan is now taking multiple medications to help slow the progression of this disease (and more to come). These medications are not cheap. For example, one medication he takes as an injection is $215 a month and not covered by insurance. He is also most likely going to need more equipment, such as motorized wheelchairs or scooters, a hospital or adjustable bed, hoyer lifts and more.
My work has been so supportive and organized this for Evan and I. We are so appreciative of this fundraiser and any help we receive. This is incredibly difficult to deal with and not the life we had imagined for us. If you’d like to donate a raffle or something, let me know and I will pass on the phone number (just didn’t want to post it publicly on here)
-Marie & Evan