Diagnosed with ALS at 33 & needing help..
Hello, my name is Lacey. This is my first time posting to this subreddit. I am 33 years old and was diagnosed with ALS on October 14, 2024. I am a mother, a wife, an aunt raising two teen girls, a daughter, and a friend. My family and I are absolutely gutted by this diagnosis. A year ago I was hiking, playing with my son, traveling, and working with elementary schoolers. I am currently disabled - unable to walk, feed myself, shower, or use the toilet without assistance. My lungs are functioning at 38% and I am on a non invasive ventilator.
Our insurance unfortunately doesn’t cover much and the Mayo Clinic where I’m being monitored and receive my care will no longer accept our insurance as of the new year. I have bills piling up with Mayo. I am paying off several specialists including two neurologists, rheumatologist, cardiologist, and gastrointestinal specialist. ALS is a diagnosis of elimination of all other possibilities. It took 16 months of extensive and invasive testing after symptom onset to finally receive my diagnosis. I am currently waiting for my disability to be approved so that I can get additional assistance.
My husband is my primary (unpaid) caregiver. He works from home full time, is the default parent to our 3 year old son, and gets me to all of my appointments. It’s becoming difficult to transport me due to my left leg succumbing to paralysis. We need a vehicle with abilities to transport my power chair, such as an accessible van with a ramp. This will cost roughly $25,000.
After a bad fall the day after Thanksgiving , I am declining rapidly. I am quickly approaching needing 24 hour care. My husband deserves a break from caregiving duties. He is at risk for a heart attack due to the stress of everything on his plate and the emotional toll caring for his terminally ill wife. Insurance does not cover caregivers. In our area this cost is around $30/hour.
Your donations will go towards everything mentioned above along with any future equipment and medication I may need. It pains me to ask for help, but I am desperate. I don’t want to leave behind tremendous debt for my husband to deal with on top of grieving and managing to raise our sweet boy without me. Thank you.