October Is Rett Syndrome Awareness Month
What is Rett Syndrome?
Imagine the symptoms of Autism, Cerebral Palsy, Parkinson’s, Epilepsy and Anxiety Disorder… all in one little girl.
Rett Syndrome is a neurological condition which most often strikes previously healthy little girls between their first and second birthday and leaves them with multiple disabilities and medical complexities for life.
Many children with Rett are unable to speak, walk or use their hands. Breathing problems, feeding tubes, seizures, anxiety, gastrointestinal and orthopedic issues are common.
There is currently no cure for Rett Syndrome but there is hope - Rett Syndrome has been reversed in animals. It has a single genetic cause and is one of the only neurological disorders in the world to demonstrate dramatic symptom reversal in the lab.
Reverse Rett is a UK medical research charity working to speed treatments and a cure for Rett Syndrome. They work to drive promising lab developments into tangible treatments and a cure for people living with Rett Syndrome today.
Archerfield and Rett Syndrome
Five year old Eliza McKinney from North Berwick was diagnosed with Rett Syndrome when she was 3 years old. She had been a perfectly happy and healthy baby until she reached 14 months when her parents Ross and Catherine realised she was not reaching her milestones. After endless tests, and while her parents watched her lose the ability to wave, point, sit, feed herself and speak, she was finally diagnosed with Rett Syndrome when she turned 3.
Elly Douglas-Hamilton, chairman of Archerfield Estates, is a friend of the McKinney family and has become a regional ambassador for the charity. Elly is passionate about supporting the cause and is proud of the fact that Reverse Rett is Archerfield Walled Gardens Chosen Charity. Over the years, we've helped Reverse Rett to raise over £30,000 through hosting the annual 5k run, and donating 50p of every burger sold. We have also had an adult size change station fitted in our disabled loo to help support families and carers.
Virtual 5k Run
The Reverse Rett Change is Possible Virtual Run takes place this October and you can impact Rett research by completing a 5k or 10k on ANY day during the month. Sign up and find out more here. Your registration fee and sponsorship donations will go directly to research which will help to speed treatments and a cure for Rett Syndrome.