This page is set up with our son TJ
19,who has a Rare muscle waisting condition Duchenne muscular dystrophy, Diagnosed at 3 Tj steadily got weaker, but over the last 2 years its been more rapid, he's lost about 80% ability to move, his heart function is 21% and hes in heart failure,
In his electric chair tj is unstoppable and still has a bit of independence
Tj attends eccles 6th form college a couple of days a week, most people see the happy Tj, not the young man who's in constant pain.
Life expectancy is late teens to early 20s but it differs as one friend died at 14 its always in the back of your mind
Its hard saying goodnight to your child not knowing if he'll be here tomorrow,
Tj is a positive young man and just want some adventure and that's why we are asking for help with a bucket list of wishes that are realistic to his condition,
We've contacted limitless cruises who specialise in disabled holidays around Europe from hoists to health insurance from £3000 to £5000 for Tj for 8 to 12 days we've now raised the deposit but tj cannot travel alone.
A lovely lady called jane has secured family weekend tickets to FormulaE final in London on the 25/26 july so we plan to stay for 4 nights to do all the sights like Harry Potter World, the London Eye jack the ripper tour and more but adapted accommodation in London is over £1400 standard premier inn plus how ever much would be needed for him to do everything he wants in 4 days,
Tj is car mad and in another life would have been a mechanic or car salesman,as a family we know tj could have 3 years or 3 months we don't know, all we do know is he is in heart failure at 21% and is losing strength in his hands that's his only independence and we need to do these things whilst he can enjoy them, Tj is our son and he is our responsibility to give him everything but we are not in a position to do so and that's why I'm asking as a Dad please help me to give our son what every son and daughter deserves the best