October is Rett Awareness month. What you may not know is, like many girls with Rett Syndrome, Stella cannot speak. She cannot tell us that she has a tummy ache, or that the fabric on her clothes makes her itchy, that she’s afraid of the dark or just needs a cuddle. She cannot feed, dress or go to the toilet independently. With time she will likely lose many of the skills that she has done so much therapy and worked so hard to acquire. She bites, kicks, screams and cries as her only way to communicate. And you would do the same too if you were trapped in the prison that is her body; it never is doing what she wants it to do.
Regardless of the struggles, we are however, very grateful every day that Stella, unlike many others with Rett is able to walk, jump on the trampoline and even ski! Her gorgeous smile and cheeky laugh let us know that she is inside with an awesome personality, just waiting to get out.
And, there is hope. Despite the devastating effects of this syndrome, like finding the proverbial needle in the haystack, the root cause for Rett has been identified as a single gene: MECP2. In addition, this condition does not cause the brain cells to die; it is NOT neurodegenerative. Lastly, it has been proven that restoring levels of the MECP2 protein that the gene of the same name normally produces dramatically reverses the symptoms in mice. These three factors have given the proof of possibility that a cure can be found for Stella and all the other girls and ladies with Rett Syndrome.
Help us to raise much needed money for the Rett Syndrome Research Trust to fund the projects in key therapeutic areas that show promise for a cure for Rett Syndrome. Take a look at the video below to see how your donation will help:
https://www.youtube.com/watch?v=RqhGxqdv_fM&feature=youtu.be&mc_cid=2398919d78&mc_eid=be01c1b4de
And please don’t forget to go “Speechless. For Rett.” on Saturday 24th of October at 2pm ET for one hour, remembering that Stella will be speechless, until we find a cure.
Thanks so much for your support.
Lots of love, Stella, Axel, Roxanne and Göran
| Name | Donation Amount | Date |
|---|---|---|
| Goran Lindhe | $1,500 | November 20, 2024 |
| Anonymous | $100 | December 11, 2023 |
| Rachel Simmons | $100 | October 02, 2023 |
| Anna Fessler | $100 | September 20, 2023 |
| Cheryl Miles | $20 | September 10, 2023 |
| Geremia Boschetto | $40 | September 09, 2023 |
| Loraine Yap | $150 | September 05, 2023 |
| Victor Cardoner | $50 | September 04, 2023 |
| Carolien/Leon Hiltermann | $50 | September 04, 2023 |
| Claire Lee | $100 | September 03, 2023 |
| Agnieszka Zychowicz-Defever | $120 | September 03, 2023 |
| Anonymous | $20 | September 03, 2023 |
| Veerle Oster | $50 | September 03, 2023 |
| Sarah Olofsson | $50 | September 03, 2023 |
| Anonymous | $100 | May 18, 2021 |
| Marija Pejovic Wallin | $100 | January 24, 2021 |
| Anonymous | $100 | January 05, 2021 |
| Balazs Racz | $100 | December 17, 2020 |
| Markus Pfanner | $100 | December 14, 2020 |
| LAURA MONARI | $100 | December 08, 2020 |
| Mikael Rauer | $100 | November 26, 2020 |
| Anonymous | $100 | November 25, 2020 |
| Colleen Mayne | $100 | November 18, 2020 |
| Patty Yang | $250 | November 16, 2020 |
| Sara Atallah | $100 | November 06, 2020 |
| Joakim Krumlinde | $100 | November 05, 2020 |
| Peter Prem | $100 | November 03, 2020 |
| ZHIYUN NI | $100 | November 02, 2020 |
| Jeanette Sten | $100 | November 01, 2020 |
| Salvina Micallef | $75 | October 31, 2020 |
| Aude Villette | $500 | October 30, 2020 |
| in memory of Farmor & Farfar | $5,000 | October 29, 2020 |
| Joost Mackor | $100 | October 27, 2020 |
| Hao ZHANG | $100 | October 27, 2020 |
| Francois Parisod | $100 | October 26, 2020 |
| Sonia Forster | $30 | October 26, 2020 |
| Anonymous | $100 | October 26, 2020 |
| Richard Hancock | $100 | October 25, 2020 |
| Liudmila Konovalova | $100 | October 25, 2020 |
| Pamela Semmens | $100 | October 24, 2020 |
| Asli Sahin | $20 | October 23, 2020 |
| Loraine Yap | $200 | October 23, 2020 |
| Louise Westman | $100 | October 23, 2020 |
| Rachel Arceo | $500 | October 23, 2020 |
| Anonymous | $100 | October 23, 2020 |
| Marina Danilova | $100 | October 22, 2020 |
| Seth Bonnici | $100 | October 22, 2020 |
| Adam Mayne | $500 | October 21, 2020 |
| Anna Kellner | $100 | October 21, 2020 |
| Marguerite Blulle | $200 | October 21, 2020 |
| Belinda Crawford | $200 | October 21, 2020 |
| Malinda Barrett | $100 | October 21, 2020 |
| Araceli Casas | $100 | October 20, 2020 |
| Andrea Novo Gandiaga | $100 | October 20, 2020 |
| Peter Arvidsson | $100 | October 20, 2020 |
| ERIC SCHMID | $100 | October 20, 2020 |
| Ekaterina Ramazanova | $100 | October 20, 2020 |
| Anonymous | $100 | October 20, 2020 |
| Magdalena Sandell Bengtsson | $100 | October 20, 2020 |
| Anonymous | $100 | October 20, 2020 |
| Anonymous | $100 | October 20, 2020 |
| Jean-Paul Salchli | $100 | October 20, 2020 |
| Håkan Stridsberg | $200 | October 20, 2020 |
| David Prosser | $100 | October 20, 2020 |
| Hazel Prosser | $100 | October 20, 2020 |
| Annette Murillo | $100 | October 20, 2020 |
| Annette Murillo | $0 | October 20, 2020 |
| Annette Murillo | $0 | October 20, 2020 |
| Josef Meyer | $100 | October 20, 2020 |
| Raul Perez | $100 | October 20, 2020 |
| Ronald C Arceo | $100 | October 19, 2020 |
| Hakan Soderholm | $100 | October 19, 2020 |
| Magali Gardes | $100 | October 19, 2020 |
| Anonymous | $100 | October 19, 2020 |
| Olle Roos | $200 | October 19, 2020 |
| Bruno Brocchi | $100 | October 19, 2020 |
| Rui Solposto | $100 | October 19, 2020 |
| Natalie Douglas | $500 | October 19, 2020 |
| Anonymous | $100 | October 19, 2020 |
| Matija Cindric | $100 | October 19, 2020 |
| Melissa Radmanovic | $100 | October 19, 2020 |
| Natalie Campbell | $1,000 | October 19, 2020 |
| ELLEN BECK-TYSON | $100 | October 19, 2020 |
| Anonymous | $100 | October 19, 2020 |
| Martyn Jenkins | $75 | October 19, 2020 |
| Rica Bonnici | $500 | October 19, 2020 |
| Josephine Ang | $500 | October 19, 2020 |
| Raquel Duszynski | $500 | October 19, 2020 |
| Anonymous | $100 | October 19, 2020 |