Rett Syndrome Token V2
New Launch with a better vision!
Designed and developed to improve the quality of life for those that suffer with Rett Syndrome to help provide donations, equipment and mainly raise awareness – whilst maintaining a community with a growing project.
The token has been designed and put together by a sole individual (myself Gary – Father of Evie) mainly because i want to create awareness around Rett Syndrome – My Daughter Evie-Mae was just 1yr 6months old when she was diagnosed with the harsh non curable condition she’s now 5 and we are trying to give her the best shot at life possible, with the help of the community this is possible not only to help Evie but to also help many more children.
Rett Syndrome is a rare genetic neurological and developmental disorder that affects the way the brain develops. This disorder causes a progressive loss of motor skills and language. Rett syndrome primarily affects females. Most babies with Rett syndrome seem to develop as expected for the first six months of life which then they regress and forget everything they have learnt from been born – Evie is unable to do anything that we all take for granted daily such as sit up, walk, talk, crawl, eat and many more life limiting functions along with this she suffers with extreme epilepsy which is the ultimate end game for any child with Rett as the seizures take so much control there is no going back, Also Evie has a gastrostomy-button (or G-button) as well as a spinal cast to prevent her scoliosis from getting worse. Evie will never be independent and will always rely on my self and mum to be able to live even to the point of rolling her over
There is still no cure for this and we can possibly together make a difference or at least improve the lives of those who suffer with Rett.
More information can be found on our website.