Most commonly known as Lou Gehrig's Disease. ALS, or amyotrophic lateral sclerosis, is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, ALS patients eventually lose the ability to walk, dress, write, speak, swallow, and breathe. There is no cure or treatment that halts or reverses ALS. Half of all people affected with ALS live at least three or more years after diagnosis. Twenty percent live five years or more; up to ten percent will live more than ten years.
Bill was diagnosed late February of this year after he started to feel weakness in his legs, loss of strength in his arm muscles, and had extreme fatique. He lost 20 pounds in one month. Three weeks after his diagnosis he had a follow up appointment with his neurologist and the news was not good. His symptoms were progressing faster than they had hoped. The good news is his doctor wanted him to get in on a clinical trial at Duke University and Bill has been accepted!
The expenses with his diagnosis will increase as the disease progresses.
The most immediate need is getting him back and forth from Northern Virginia to Duke for his appointments and finding a home (without stairs) that will make getting around easier. Bill is walking with a cane, tires easily, and sometimes falls. Because his career was in construction he is unable to return to work. They are now a one income family. Lisa, Bills wife, has been working hard to find a way to get him the help he needs, joining support groups, learning how to advocate for ALS patients and increasing awareness. She has been amazing and her unconditional love and support for my brother is inspiring. Although she will say she's the lucky one, I know he has been blessed to be loved by her. Eventually Lisa's paid time off will run out and she will be forced to take time off, to take Bill to his appointments, without pay.
As for now, there will be moving expenses with finding a one story home and making the home wheelchair accessible with a ramp, roll under sinks, and with wide doorways to accomodate a wheel chair. Also in the early stages of ALS other items needed could be button holders to make dressing easier, an electric toothbrush, a shower attachment with a flexible hose, hand grips for the shower and bathtub, pullover shirts, elastic waist pants, slip-on shoes, and Velcro for fastening things. For the middle stages he will need a raised toilet seat, a shower chair, a walker with wheels and hand brakes, a wheelchair, a vehicle to accomodate a wheelchair, a neck collar, a reclining chair, and a transfer board for getting from the wheelchair and onto another chair or the tiolet. In the advanced stages of the disease he will need an electric bed, a bedside commode, a suction machine and communication devices.
Your Support Matters!
No one facing ALS or any life threatening disease should ever have to worry about money or how to afford the things they will need. My wish for Bill, Lisa, and their kids Richard, Presley, and Keagan is to have the time of their lives, to live life to the fullest and enjoy every moment they have together. If everyone who reads this gave just $5.00, it would dramatically change their lives. Bill deserves to live a comfortable and happy life should it be 3 years, 10 years, or 20. Please help me... as his big sister, all I want to do is make it all ok and I can't...this is the only thing I can do. Please help me, help him and his family have one less burden to worry about.
- Richard McMullen
- Richard McMullen
- Laura McDougall Ketterman
- Ellen Dee Brown
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