When Maggie was first diagnosed with Rett, AJ and I were adamant that we would only donate money to find a treatment or cure for Rett. Then we found out there were clinical trials that had started but were having a hard time getting applicants to commit to the trials. Why would this be? We couldn’t fathom it.
Maggie was 3 years old at the time and we knew we would do anything to get her a treatment. If there was a possible drug, nothing would stop us. Why were parents not jumping to get their girls into trials? We understand, of course, that trials aren’t treatments, but trials are the path to treatments. Without completed trials, treatments will never come.
Then we started doing the math. The cost of having a girl with Rett is significant. There are therapies, doctors appointments, specialists, adaptive gear, therapies, adaptive toys, and supplements to name a few extra costs. Most families’ budgets are strained trying to help their girls on a daily basis much less add the cost and expenses of traveling to a trial for days to weeks at a time, over and over again. Not to mention the days off of work. When we put this all together, we decided we wanted to help. This is the exact reason why Colleen English and her family started the Rettland Foundation – to help families get to the trials. If families need help getting to trials, and we can help, we wanted to. So we’ve donated a fund of $3500 for her organization in the hopes that people would match our fund and expedite this process.
A treatment or cure can’t get here unless trials happen, trials can’t happen if families can’t get to a trial, and families can’t get to trials when participating is as expensive as it is.
Will you consider a donation to rettland.org in order to help get us closer to the cure?
Thank you for following along.
Therapies, therapies, therapies….