About the Site

My name is Adele Smolansky and I have an 8 year old sister with Rett Syndrome. I created this website for kids who like me have a sibling diagnosed with Rett Syndrome.

Rett Safe Space is a safe space for all siblings of kids with Rett to share their experiences. Life is hard for Rett Syndrome patients, but it's not always easy on the siblings either.

Rett Safe Space is a platform where you can share your experiences and show your creative writing skills along the way. Being able to express yourself through writing, anonymously or not, can lift weight off your chest. There are many aspects of daily life and emotions which you may be scared to share with other people around you. Here you can anonymously say anything you want and no one will know who you are without your permission.

Additionally, reading stories of others may help you see that you aren’t alone with your puzzling and conflicting thoughts and emotions. By going to the community page, you can read the stories that others with similar experiences have written. Parents can also read these stories and see what thoughts are going through our minds and what we, as siblings of Rett kids, may be thinking about. By sharing our thoughts and fears and explaining how we react to the unusual circumstances of our lives, we can educate our own parents and help them better connect with us, so we can all pull through the difficult situations together.

Information

Rett Syndrome is a neurological disorder that affects mostly girls and it is caused by a gene mutation. Majority of girls with Rett can’t talk and walk, up to 80% have seizures and variety of other serious health problems. It is an extremely rare disease with fewer than 1,000 cases per year. Since it is not a hereditary disorder, having a sibling with Rett does not increase your chances of having a child with Rett! As of right now there is no cure for this disease, but science is moving forward rapidly. We are at the footsteps of a great change. If we all get involved, we will bring about the cure that our siblings afflicted with Rett are waiting for much faster! To donate click here!