A bucket list fundraiser has been set up to raise £3,000 for a Salfordian with a life-limiting rare genetic disorder.
19-year-old TJ Taylor lives in Swinton and has Duchenne Muscular Dystrophy (DMD), a rare genetic disorder with an average life expectancy of 22.
TJ was diagnosed with Duchenne Muscular Dystrophy, known as DMD when he was three years old.
DMD is a genetic disorder characterized by progressive muscle degeneration and weakness due to the alterations of a protein called dystrophin that helps keep muscle cells intact.
Since his diagnosis, he has steadily got weaker and has now lost 90% of his body movement. His heart function has dropped to 21% from 51% in 12 months.
He lives with his parents Tommy Mcmanus and Lisa Taylor, who have set up his bucket list fundraiser aiming to raise £3,000.
The fundraiser that has already raised £1,905 will aim to send TJ to visit London, go to music concerts and hopefully even go on a cruise.
Described by his dad as a ‘cheeky, happy 19 year old’, the teenager, who attends Eccles Sixth Form College has put together a bucket list of things he would like to do as he continues his fight against DMD.
TJ is now unable to walk and uses an electric wheelchair to get around but does not let his condition drag him down, says dad Tommy.
“He’ll go out, he’ll go to college, he’ll mix like everyone else, it doesn’t stop him. He likes to go around on his own through the streets and come back again.
“If it was me, I’d be depressed and angry but he never complains about his illness, he never has done.
“I thought it would be harder because he has walked, he’s done his sports days and his egg and spoon races.”
TJ’s bucket list:
Although TJ suffers massively in terms of his limited independence, he insists he just “gets on with life”.
“TJ loves days out, it could be small things but he just wants to be out”
“He would love to go on an accessible cruise, but their prices are between £2,800-£3,500 per person”, says Tommy.
The family are hoping to book a trip to London in the new year, with TJ wanting to go on the London Eye and experience a Jack The Ripper tour as part of his bucket list.
TJ is a huge fan of cars and music and has always wanted to become a car salesman.
“He’s always wanted to be a car salesman but I can’t see him getting that chance, he loves F1 but we know it is not cheap, especially the race weekends”, Tommy added.
“He’s into any sort of music, from country music to Tupac. He likes a bit of Noah Kahan and Luke Combs. He’s always liked The Script- the issue isn’t the tickets it’s the wheelchair accessibility.”
In 2019, the teenager went on a trip to Disneyland Florida with kids charity Child Flight. He hopes to visit The States again.
“He’d love to go back to America and do Route 66 and see Area 51″, dad Tommy revealed.
A day with DMD:
Tommy gave an outline of what a typical day in TJ’s life looks like.
“It takes about an hour to get him into bed and settled. TJ suffers with tailbone issues so needs repositioning five to 10 times per night which takes 45 minutes each time”
“There are days where he can spend an hour in his chair before he gets a bit sore”
TJ still does things such as brushing his teeth and washing his face. His biggest fear is “not being able to use his hands”, says Tommy.
TJ has Scoliosis however the chance of him surviving the anaesthetic for the operation he required was roughly 10%, a risk he and his family weren’t prepared to take.
When TJ was younger, the doctors kept saying to mum Lisa that “he’s a late walker.” After his eventual diagnosis, parents Tommy and Lisa had “no idea what DMD was, we’d never heard of it”
The importance of family:
Unfortunately, TJ and his family do not know how much time he has left, but the teenager has a hugely supportive family around him, says dad Tommy.
“The best thing about it is that he’s got a big family and no one has ever treated him differently. We’ll have a joke, he loves it because he’s never been treated differently”
TJ is an uncle to Darcie, 4, and Brady, who is 7 months old.
Tommy says that “apart from anything else, I just hope people read up on Duchenne Muscular Dystrophy”
If you would like to learn more about TJ’s story and donate towards his bucket list fund, please click here.
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