Trek for Tilly
Donation protected
Trek for Tilly - Yorkshire Three Peaks
This is the first time that we have organised an event for Tilly - to continue raising funds for Tilly to access CME therapy and it takes place on September 15.
Tilly is our little girl, who is nearly three, 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 progressively 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 earlier this year to help her limbs unfreeze and to get her moving much more, in a bid to hopefully one day get her walking.
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 to ensure we can maintain Tilly's access to the specialist physio, who is unfortunately for us, based in Canada.
Hence the creation of this page and the creation of Trek for Tilly 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 walk, if she stands and uses her strength to stay standing, she won't fall over.
That is it in very, very simple terms, but it has had a fantastic effect already. Although we will campaign for CME training for therapists in the UK, we need to continue fundraising so she can access CME with the amazing Simona in Canada and also here when Simona comes over in October.
On September 15th a group of family and friends will be walking some or all of the 3 Yorkshire Peaks to fundraise for Tilly's treatment. At the time of writing this includes Rob, Kirsten, Janet, Andy, Sean, Liz, Caitlin, Debbie, Jenny, Martin, Lizzie, Cameron, Andy F, Andy B, Nicol, Steve, Ben, Chris, Pam, Laima and hopefully a few more to be confirmed!
The Yorkshire Three Peaks route is 24 miles (38.6km), and includes 1585m (5200ft) of ascent.
It takes on the peaks of Pen-y-ghent, Whernside and Ingleborough in around 12 hours. These peaks form part of the Pennine range, and encircle the head of the valley of the River Ribble, in the Yorkshire Dales National Park.
Anyone who would love a personal challenge to do one, two or three, please message me via Tilly's Tales on Facebook because we would love you to take part to help us help Tilly.
Do it for Tilly. Our very special Superhero. X
This is the first time that we have organised an event for Tilly - to continue raising funds for Tilly to access CME therapy and it takes place on September 15.
Tilly is our little girl, who is nearly three, 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 progressively 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 earlier this year to help her limbs unfreeze and to get her moving much more, in a bid to hopefully one day get her walking.
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 to ensure we can maintain Tilly's access to the specialist physio, who is unfortunately for us, based in Canada.
Hence the creation of this page and the creation of Trek for Tilly 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 walk, if she stands and uses her strength to stay standing, she won't fall over.
That is it in very, very simple terms, but it has had a fantastic effect already. Although we will campaign for CME training for therapists in the UK, we need to continue fundraising so she can access CME with the amazing Simona in Canada and also here when Simona comes over in October.
On September 15th a group of family and friends will be walking some or all of the 3 Yorkshire Peaks to fundraise for Tilly's treatment. At the time of writing this includes Rob, Kirsten, Janet, Andy, Sean, Liz, Caitlin, Debbie, Jenny, Martin, Lizzie, Cameron, Andy F, Andy B, Nicol, Steve, Ben, Chris, Pam, Laima and hopefully a few more to be confirmed!
The Yorkshire Three Peaks route is 24 miles (38.6km), and includes 1585m (5200ft) of ascent.
It takes on the peaks of Pen-y-ghent, Whernside and Ingleborough in around 12 hours. These peaks form part of the Pennine range, and encircle the head of the valley of the River Ribble, in the Yorkshire Dales National Park.
Anyone who would love a personal challenge to do one, two or three, please message me via Tilly's Tales on Facebook because we would love you to take part to help us help Tilly.
Do it for Tilly. Our very special Superhero. X
Organizer
Dee Cowburn
Organizer
