This year marks a very special event in Stella’s life … She will celebrate her very first birthday party! 8 may be a little late for your first party, but not being able to speak, Stella has never begged us earlier to throw her a party like her brother did and then later, having wanted to throw her one, we never knew if she would like it or who her friends were. But the stars seem to have somehow been in alignment this year shining light on some signs that Stella was ready for a celebration: being invited to several parties herself, and with the help of her wonderful aide Simone, her eye gaze device and the caring community of children, parents and teachers at ISL it’s clear the time has come!
To mark this special day, many of you have kindly asked what gifts Stella might appreciate and after reflection we think Stella would most appreciate having her voice. For that, we need a cure. The Rett Syndrome Research Trust (RSRT) has been relentless in advancing the research to a cure for Rett syndrome. Today, with the help of RSRT, there are currently 8 biopharmaceutical companies working on a cure, where in 2017 there were zero. After promising gene therapy clinical trials on adult patients, the FDA has approved clinical studies in paediatric patients. A cure is in sight and Stella would like to help herself by donating her birthday gifts to the only cause that matters to her. Please help her!
Thanks so much for your support.
PS – For those of you who would like to know a little more about Stella’s story: https://rettgive.org/campaigns/hope-for-stella/