Hello Friends and Family!
As many of you know, we were planning to host our Kentucky Derby fundraiser on May 2nd. Due to the Covid-19 virus, we had to cancel our event. This event unites our friends, family and community and reminds everyone of the importance and urgency of funding Rett Syndrome research. This “ask” is in lieu of our event for 2020.
We, the Endres family, and thousands upon thousands of other families affected by Rett Syndrome, ask that you please step back and take a look at your own life. Look at your own family; your own children….Imagine if you had a beautiful child who was born perfectly healthy. Imagine that she woke up one day, before the age of two years old, and no longer could walk or talk or even pick up a Cheerio. Imagine the devastation and heartache. As a parent, you would do everything you could do in your power to “fix” the situation, right? The “fix” takes money!
It feels like a very odd and perhaps wrong time to be fundraising these days. Our world is in crisis and we are all trying to navigate these uncertain times. Another Rett mom recently shared the following words to her family and friends, asking for their support in helping to fund research on Rett Syndrome and it really made an impact on Justin’s and my heart. It made us realize that we cannot stop fighting for Jilly and all the others diagnosed with Rett Syndrome. Please take a moment to read her words and consider making a donation to the Rett Syndrome Research Trust.
If you think being “trapped” in your house the last couple months is unbearable…imagine being trapped in a body you can’t control the movements of.
If you think not being able to talk to your friends face to face is sad… imagine losing your ability to speak completely.
If you think wearing a mask to the store makes it hard to breathe… imagine involuntary breath holding, seizures and the fear you’d have not being able to draw a breath when you tried.
If you think having your normal activities interrupted is causing you pain… imagine never having the chance to do any of the “normal” things your peers can do.
That’s how the children with Rett Syndrome live Every. Single. Day.
So covid-19 or not, we have to keep fighting for them. We cannot waste any time.
— Tsan Diltz