Hello. My name is Shannon Cohen. My husband, Marc Cohen, 51, has been diagnosed with a progressive neuromuscular disease. Marc has gone from a big, strong, and capable man who everyone could depend on, to now being the one in need of support. This disease has robbed him and our family of so many things, but he is a fighter and we are with him every step of the way.

We have had to make accommodations to our home to make it livable. Some of these modifications include: stair chair installation, purchase of a Sleep Number bed, assisted lift toilet seat, motorized wheelchair, and lifting dollies. Our home is currently under construction to create a handicap-accessible bathroom with a zero-entry shower to allow for one-floor living. We will need to have our van retrofitted for wheelchair access or purchase a handicap van as well.

Marc continues to work and provide for our family. Unfortunately, this makes access to financial supports very limited and leaves our family financially responsible for everything needed for Marc’s well-being.

Our daughter, Mia, is her daddy’s number one supporter and is always ready and willing to help. She is dealing with more than any 10-year-old should have to.

Being in this position is something new for all

of us and something we could never have anticipated.

We are learning that we must accept and lean into this time of need and allow ourselves to be vulnerable by making our personal lives visible and asking for support.