Eight years ago I contracted a viral infection in my brain (encephalitis) that left me with a very damaged nervous system. Involuntary reflexes like heartbeat and blood pressure were essentially broken.
Any random exertion can cause me to faint, and I learned to prevent that by pretty much doing nothing. The only solution was no activity. I have had small remissions but a blackout can take weeks to recover from. I have needed help functioning at home ever since. I am confined to a a wheelchair for extended outings and if I leave my home by myself I'm in constant fear of fainting in public.
Within the first three years I searched for an answer and came to know the word "incurable" very well. More than twenty specialists had told me there was nothing to do until new nerves could be made from stem cells.
I finally drew the line and said "No more doctors. I'm going to live with this and accept it. " I did a pretty good job. I learned to exist from chair to chair, never standing up longer than 3-5 minutes. I had friends and love in my life despite being homebound, and feel like I have made the best of it.
The illness is called Postural Orthostatic Tachycardia Syndrome, with the silly acronym POTS. It is rare, almost impossible to find a doctor who's heard of it, and highly misunderstood. On New Years Eve I learned that there has been major progress and an apparent cure. Rather than non-existent stem cell therapies, it can train other nerve systems to do the job of the damaged ones.
There is now a treatment center with an intensive, weeks-long program that basically rewires the nervous system. It seems to be very successful and I'm in shock that there's something out there that could help me. My doctors think it is very promising and have encouraged me to go, and I'm heartened by their support.
When I think about being able to walk further than a hundred feet or stand up in the shower, I just cry. Or having the stamina for a REAL concert tour and not just one show a week, it's been ages since I could let myself think like that. I could come to your town! Maybe I could even have a garden again.
I need to go retrieve my life at the POTS Treatment Center at Texas Presbyterian Hospital in Dallas. It is not covered by insurance and it costs tons of money. I am asking for financial support to pay for the weeks of treatment, expenses and cover house bills while I am there.
All I can think of is giving back with music in a strong healthy body! Please consider a donation to help me get better and live a full life again. I know I have so much to offer in this world. Bless you and thank you.
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