“Addison (or Addi for short) was born in February 2014. She has had a different journey to most little girls her age. Addi has never crawled, walked, talked and has lost what little use of her hands she once had. She is constantly affected by bouts of hyperventilation and breath holding, seizures and she has recurring sleep issues. Our family has watched Addi lose almost all the bodily control that she once had. The road ahead is terrifying with the possibilities of scoliosis, eating difficulties, heart conditions and more. Addi has Rett Syndrome. “
Rett is a disabling genetic neurological disorder that affects mostly females. It is caused by random mutations in a gene called MECP2. Most girls develop typically for the first 6-18 months of their lives and then slowly begin to regress and lose their bodily functions. Imagine the symptoms of Autism, Cerebral Palsy, Parkinson’s, Epilepsy and Anxiety Disorder all rolled into one little girl. There is no cure at the moment. However, there is great hope for the 350 000 girls and women around the world living with this syndrome. Rett Syndrome stands apart from other neurological disorders due to the dramatic reversibility of symptoms in animal models.
Our family has joined the fight against Rett and are supporting the Rett Syndrome Research Trust (RSRT). RSRT is a US based non-profit organization with a highly personal and urgent mission: a Cure for Rett Syndrome and related MECP2 disorders. Key facts about RSRT may be found in the attached document. RSRT have recently launched a 3-year strategic research plan called The Roadmap to a Cure. Details of the plan may be found at the following web page: https://reverserett.org/cure/
Our family launched a fundraising campaign called All in for Addi. We have raised a little under US$9,000 year to date. Donations on the campaign are made via credit card in USD. 93% of every dollar donated is channelled toward research. You can find out more about Addi’s story on the crowd funding page: https://rettgive.org/projects/all-in-for-addi/
I invite you to get a sense of RSRT and Rett Syndrome in the following two short video clips: