Just4Children are fundraising for Tilly to access groundbreaking therapy, specialised equipment and home adaptions aimed at helping her to walk and lead a fuller life.
Tilly is our little girl, who is three from Guiseley near Leeds, and has Rett Syndrome.
Rett Syndrome is a rare, devastating, genetic syndrome that basically has robbed Tilly of the use of her hands, her legs, her arms, her voice, and will get worse as she gets older.
We have been told Tilly probably won’t walk, may die really young, will need life long 24-hour care and may develop seizures and curvature of the spine. Tilly can lie and she can sit, but she can’t transition between postures or do anything without help to meet every single need.
Tilly went to Canada for specialist physiotherapy last year in a big to help her limbs unfreeze and to get her moving much more, in a bid to hopefully one day get her walking. She has already taken six steps with support since she had her first round of intensive therapy.
The therapy was a huge success in terms of it making her stronger and we plan to continue with the physio, called CME (Cuevas Medek Exercises). We fundraised to get Tilly there and we will continually fundraise for Just4Children to ensure we can maintain Tilly’s access to the specialist physio, who is unfortunately for us, based in Canada.
We want to ensure we are continually doing our best to ensure we are helping Tilly fulfil her potential and will be holding ongoing events to support this aim.
About CME – Although we would love Tilly to walk, the main aim of this special CME therapy is to ensure Tilly has as much chance as a basic right to a quality of life as anyone else.
The physiotherapist, the only one outside of Chile to train people in CME, is based in Canada and was really impressed with Tilly when she went over and we want to build on that.
CME therapy works by getting Tilly out of her comfort zone and creating new neural pathways in her brain so she understands what her limbs are for and how to use them and how if she moves her feet she can move forward and walk.
Tilly is an inspirational little girl and we are so proud of her.