Florie's Fight Against Rett Syndrome
Welcome and Thank you for your Support
Florie-Rae is a little girl from Hertfordshire.
She is child Number 3. She has 2 older brothers called Morgan and Mason.
Florie's parents are Adam and Katie. A couple that meet at secondary school and then got together in 2003.
Florie was born on the 26th August 2010 at The Princess Alexandra Hospital, Harlow, Essex.
After a normal pregnancy, 9 days late Florie came into the world a quick 30 minute delivery.
She was a perfect princess. Everything was brilliant.
Back home with her family, everything seemed normal.
Hitting milestone, passing health checks. Florie and her family lived oblivious that things were to change.
At 16 months old, in December 2011, things started to change.
​December 2011...
Florie was slurpling her tongue, crying for hours, she was really distant and withdrawn...somethng was wrong.
In February 2012, she started clasping her hands together, rubbing like they were itching.
This behaviour was very strange.
By March 2012 she has stopped babbling, infact she was silent apart from her cry.
Her hand wringing was constant, she has stopped playing with toys. Our little girl was disappearing before our very eyes.
After seeing a private Dr our nightmares became a reality.
Florie was diagnosed with Rett Syndrome on 28th May 2012, a day we will never forget.
At the time of writing this, Florie is non verbal, she cannot hold a cup, food or anything, She has no fuctional use of her hands. She has Scoliosis (curve of the spine), She cannot walk, and can not weight bare without support. She has a feeding tube. She depends on someone else for everything. All these things she could do once.