Our Champions
Making Life Easier!
It’s been so difficult as a mother to see my child at such a young age to suffer with ALS. The world just dropped out from underneath us when we received the diagnosis. We both felt completely alone and overwhelmed by what this diagnosis meant; it was unbelievable. What does help, however, is the incredible community of supporters we are finding through it all.
Getting a diagnosis of ALS at 23 isn’t pleasant. How do you explain what it feels like when your child is diagnosed with a terminal disease? It’s devastating, and it doesn’t matter what age they are. It was absolute disbelief and anguish that someone as young as Erin, at 23, could get sporadic ALS. When she was diagnosed, she already was unable to be able to work or take care of herself and she was 2 weeks away from not having anywhere to live.
Erin went from being in a new career straight out of college, working in remote areas of Nevada, to immediately needing to go on permanent disability and needing care. In 24 hours, everything changed drastically in both of our lives, and I was in panic mode. Bringing her home to live with me in California was an easy choice, but I knew that my old house may not be adequate for her needs. One of the very first things I did was measure doorways, hallways, and wheelchair space in my home. I had several contractors come to the house to offer ideas for walk-in showers, expanding walls, removing closets, widening hallways. Everything was just so overwhelming to us and getting out of control with costs.
I decided to simplify things and focus on the biggest issues. One was that the bathroom closest to her room was so narrow it was impossible to access in a wheelchair. I wanted to turn that tiny bathroom into something functional and still beautiful for her, that could also be large enough for future needs.
It was important to me that the room be aesthetically pleasing, and I did not want a sterile looking hospital bathroom as a reminder of her disease. I wanted something that felt like a sanctuary for her. So, Erin picked out the tile that reminded her of nature and I picked out the shower trim that would be easy for her to turn on.
It’s crazy how expensive this disease really is. I had heard that in the beginning, but it is completely true, this disease can easily bankrupt you. I had reached out to several foundations/non-profits on behalf of Erin hoping to secure funds to help. In the meantime, Erin had heard of Augie’s Quest to Cure ALS and Live Like Lou through her social media. She encouraged me to reach out and I’m so glad I did. I was so excited to find out we had been awarded money towards the project, and it was perfect timing. With this gift, we were able to FINALLY finish the project and are now currently using the bathroom.
“The people at Augie’s Quest and Live Like Lou have made such a difference for us. You’ve taken what is an extremely difficult situation and made it easier for us to live with this disease.”
– Lily Taylor
