Newark teen, the only child worldwide to suffer from rare life-limiting condition visits beach after receiving life-changing buggy through charity Children Today
The feeling of sand between your toes, ice-cream in hand and the soothing sound of the sea — there’s no place like the beach.
For years, this was intangible for Tommy McGonigle, of Newark, as his wheelchair didn’t have a rain cover and was uneven on ground.
Having smashed a fundraiser in May, helped by the Advertiser, for a new all-weather buggy, the 17-year-old — the only known child in the world with an extremely rare life-limiting condition — has now received his new set of wheels.
It means Tommy is now able to travel to the beach, a place he adores and hasn’t experienced since he was four, as well as go on longer outings without the worry of being held up by his old wheelchair.
Tommy’s mum, Jo, said how life-changing the three-wheeled equipment had been for her son, and added: “He absolutely loves it. He just wants to go in it all the time.
“We can go on longer walks now and visit wherever we want, which is great for Tommy as he hates staying in. It was like groundhog day before the buggy as we were just doing the same walks every day.
“We went to the beach with our family recently and it was so lovely for Tommy to enjoy being involved with everyone, instead of having to sit in a different place or me having to carry him down somewhere. It’s definitely had a big impact on both of our mental health.”
Tommy has the body size of a six-year-old, is unable to walk or talk, has a chromosomal disorder, is missing more than 100 genes, has no muscle bulk and struggles to built fat — meaning he gets cold very easily.
Children Today Charitable Trust helped support the Newark family with the cost of the equipment and launched the fundraiser to secure remaining funds.
Mandy, Tommy’s grandma, said: “Tommy can now get out with us whatever the weather. He’s travelling in comfort and style and seems to feel like he’s even more famous than before. Tommy has always loved to be acknowledged by anyone and when people respond to his waves he explodes with joy.
“The buggy has not only given Tommy access to new terrain, new people and activities to watch but it has also now given Tommy a renewed enthusiasm for his greetings. He acts as if everyone should be as happy to see him waving as he is to bring a smile to their faces.
“We’re so grateful to Children Today for his new, stylish buggy.”
Tommy has even taken on a new role as a personal trainer for his mum. Jo said: “With the buggy I can run and push Tommy at the same time. When I’m out jogging with him Tommy laughs his head off — he thinks it’s hilarious. When I stop he’s started to do a running action at me because he wants me to carry on.
“There’s a lake by our house that we’d go around in Tommy’s wheelchair but the ground is really bumpy so it was really uncomfortable for him. We’d go around once and he’d had enough.
“Whereas now, we can go around the lake a couple of times with no problem. I jogged around the lake with Tommy for the first time.
“We went up a few hills as well which we’ve never been able to get up before with his wheelchair, so we’re finding new routes around which is great to be able to give Tommy a change of scenery.
“So along with being able to access more places now with Tommy’s buggy, it’s also easier for him to be more involved in social situations, which is fantastic.”
His all-terrain buggy is so comfortable that Tommy will happily stay in it and play with his toys, eat his food and even drift off in it.
Jo said: “To everyone who donated to Tommy’s fund — thank you from the bottom of our hearts. The buggy has helped him enjoy new experiences and for that we are truly grateful.
“The happiness and comfort this provide is something so special and without you all that would not be possible. Thanks so much to Children Today, it’s been absolutely brilliant.”
Emma Prescott, charity director of Children Today Charitable Trust, said: “We are beyond thrilled to hear that Tommy’s adapted buggy has enabled him to go to the beach for the first time since he was four.
“The comfort that this piece of equipment has brought to the teen is second to none and means that he can now relish longer outdoor adventures with his family.
“We’re excited for what the future holds for Tommy and we’re certain that his three-wheeled buggy will last him many happy years to come and will help create even more special memories.
“A big thank you to everyone who donated to Tommy’s fundraising page, you’ve helped change his life for the better.
“As our small charity relies entirely on voluntary donations to continue supporting families, like Tommy’s, across the UK. We always welcome contributions, no matter how big or small.
“Each donation makes a big difference to the lives of children and young people living with disabilities who are in desperate need of specially adapted pieces of equipment. Thank you.”
For more information about Children Today, to apply for adapted equipment or to make a donation visit www.childrentoday.org.uk or call 01244 335622.