Please read Lucas Story Below written by Dad Jason.
Lucas is 10 years old.
Lucas’ early development followed the normal pattern of any child.
He walked quite early and there appeared to be no problems with his development.
Then as he got older we started to notice that he was struggling with things like stairs, getting up off the floor and jumping.
We took these concerns to our local GP who told us there was nothing to worry about.
We weren’t happy and when we put the symptoms into the NHS website the only result was Duchenne Muscular Dystrophy.
Everything that was described matched Lucas.
We took this to the Dr who still did not agree.
We fought to see someone else and were sent to a specialist who advised us he was a toe walker and again dismissed Duchenne.
It was at his first physio session that it became clear something more was wrong.
She then sent us to another specialist and Lucas was diagnosed with Duchenne Muscular Dystrophy, in October 2009.
This was when everything changed. As Lucas’ condition started to deteriorate his self-confidence and self esteem dropped.
He had always enjoyed playing football and, despite being his biggest fan , seeing his younger brother join a football team really affected Lucas.
Luckily through an email from the Muscular Dystrophy Campaign we heard about powerchair football. This has changed Lucas’ life and his one ambition is now to play for England.
Since finding out about his condition and what this meant for the future we have been pushing to get our house adapted to meet his needs.
The original plan was to have the house adapted ready for when Lucas needed it but we are now in the position where Lucas needs the adaptations but they are not done
After several battles, including being advised to move house, we managed to get the plans done.
The local council told us that the adaptations would be around £45000 and we would have to fund the difference.
When we had the first quote through at £90000 we realised that the £30000 government grant was not going to get the work done. Although the next quotes were cheaper (£75000) the difference was too much for us to manage to raise alone.
I have worked for Ian Smith Office Products for over 20 years and they alone helped raise around £5000.
I also did fundraising with the local radio breakfast show Signal Radio by spending a week transforming from a man the to a woman (waxing, labour pains and wolf whistles!!).
We were also on Radio Stoke, in the sentinel and even had an article in Chat magazine (I had to get the dress out again!!).
This helped raise the profile of the Lucas Trust and people offered to help out with the build.
The offers of help included UK control panel doing all the electrical work for free and a roofer supplying tiles and labour.
Despite all this the original builder let us down and never even turned up.
This meant starting again.
We are project managing ourselves as the government agency charge a percentage of the total build to project manage -money we don’t have.
The build has now started and we have all the main build covered through our own funds and fundraising.
We do not have the funds for the shower, shower doors, tiles or the wet room flooring and are trying to find funds for these. We are desperate to get the work completed so Lucas can get on with enjoying his life and feel safe and independent at home.