Hello friends and family
As some of you may know, I was a very social baby that loved playing with my family, was learning to speak and sign to communicate my needs and wants. At 18 months of age, I lost all my social and play skills as well as my ability to speak. Turns out I have a rare genetic condition called Rett syndrome.
Unlike many other kids with Rett syndrome, I’m lucky to be able to use my hands to feed myself, use my legs and arms to walk, run and climb but Rett syndrome might take that away as I get older.
My dream is to be able to talk so I can tell my family and friends what’s on my mind – cause believe me I have lots to say. I also want to be able to play with my big sister, make friends, play with toys and try fun hobbies – all the things typical kids do.
This dream is being realized by a research trust called RSRT (https://reverserett.org/) which was founded by a Rett mom. She and her amazing team are on a mission to cure Rett so no other girl (or less commonly, boy) has to suffer. They have been supporting the science from labs to clinical trials and there are very promising gene therapies on the horizon but they need funding. All their funding to date has been from private people and they very much need our help.
I kindly ask that instead of giving presents for special occasions, you consider donating to Rett research. Your contribution will bring us one step closer to curing Rett syndrome which helps children and adults like me while giving us hope for a better future.
A cure would give me the chance to live my dreams and finally share my voice.
If you are not able to make a direct donation to RSRT please Swish the amount you wish to donate using the QR Code. This will only work for Swedish donations.
Big thanks and love,
Zoey (and my family)