Tayler Needs $20,000 Pompe Treatments

My daughter Tayler was recently diagnosed with Pompe Disease. In short, it is a disease that causes muscles to break down. Without treatment, it is fatal, and it has already destroyed my daughter’s quality of life. I won’t go through all her symptoms, but at 23 years old, she can’t eat on her own and has already been on a feeding tube for years. She has been in palliative care for a year. Her muscle loss has gotten to the point where she can’t even take a shower on her own. Eventually she may even struggle to breathe on her own. Numerous surgeries and procedures have done nothing to fix the problem. And before she was diagnosed, numerous doctors had been telling her nothing was wrong. That her symptoms were just anxiety. Her mental state since she has received her diagnosis has deteriorated to a devastating level. I have never seen her this sad, angry, hurt and defeated. I am hoping it is just a stage in the process that will pass. But this for me is the most heartbreaking part. At 23 she is suddenly learning that the life she worked so hard to be successful for – starting her first job at 14, graduating high school at 16 and starting college, working 2 jobs and going to college all while remaining the sweet, loving funny caring girl she was – is gone, she has now lost her independence.

We are doing the best we can. Medical expenses have already depleted the savings of our family. Only after years of trying to find the right doctors and get her the right diagnosis, are we finally on the road to treatment. The only treatment for Pompe disease is an enzyme therapy that costs $200,000 a year. We don’t have anywhere near that kind of money. And insurance doesn’t cover it all. Insurance also doesn’t cover nurses for her palliative care, so I am the primary caretaker for my daughter.

Your donation will help in so many ways. It will help us pay for those crazy medical expenses I was talking about. It will help us travel out of town to make her doctors appointments with her specialist doctors. It will help me take care of her and the other kids in our family while we struggle to make ends meet and keep our whole family housed, clothed and fed. Any dollar you can spare will help. Thank you.