Help with Robin’s Fabry disease treatment
Donation protected
When my son was born, we didn’t expect in our wildest dreams that he would have special needs and require physical therapy and genetic testing. We equally didn’t expect that, in the course of figuring out what’s ailing my son, discover that I had a potentially fatal disease lying beneath the surface.
What was a visit to the geneticist for my son quickly turned into a panicked examination of me for something I had never heard of: Fabry disease.
In short, Fabry disease is a genetic mutation of the X chromosome that inhibits the body’s ability to produce an enzyme called Alpha-galactosidase A, which is essential for the body to “clean up” lipids and proteins in cells. Over time, this “junk” builds up and leads to progressive kidney disease, heart failure, and/or stroke. A person with untreated Fabry can expect a shortened lifespan (for men it’s 15-20 less years). The idea of not being around for my son as long as I wanted to is a hard reality to swallow.
Although not curable, for about $314,000/yr this disease can be treated with IV therapy. And for myself, the closest treatment is 5 hours away in Seattle. While insurance will absorb most of the treatment cost, the travel and copays are expensive and aren’t covered. We also don’t meet the requirements for available scholarship programs
The goal of this fundraiser is to raise money for a year of treatment. It should cover most of the cost of travel and copays until I’m able to get treatment closer to home (prayerfully). If you’re able to support financially, any amount is helpful. In either case, whether you can support or not, prayer is appreciated. This is a difficult thing to navigate with everything else life has thrown at us over the past year.
God bless.
Organizer
Robin Schultz
Organizer
Spokane, WA