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.

But for many years that was impossible for Newark teenager Tommy, who was unable to access the uneven grounds of the beach or the woods in his wheelchair, needed because he suffers from an extremely rare condition.

However, since Children Today Charitable Trust helped provide an adapted buggy for the 17-year-old, Tommy, who his family call a social butterfly, has been able to go out on much longer outings and has visited the beach for the first time since he was four.

Tommy’s mum, Jo, describes how life-changing the three-wheeled equipment has been, saying: “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 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. Everyone loved pushing him around in his new buggy. Tommy had a brilliant time and it’s definitely had a big impact on both of our mental health.”

The teen, whose body size resembles that of an average six-year-old’s, has an extremely rare condition and is the only known child in the world with it.

Tommy, who his family brand as ‘the happiest little chap you’ll ever meet’, has a partial chromosomal deletion disorder and is missing over 100 genes.

Tommy’s family said he squealed with excitement when he saw the Freedom for Kids equipment and he now points to it every morning.

Mandy, Tommy’s grandmother, added: “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.

“We’re so grateful to Children Today for his new, stylish buggy.”

Tommy, who is unable to walk or talk, has even taken on a new role as a personal trainer for his mum!

Jo explained: “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 which 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.

“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 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.”

It’s certain that the equipment will accompany outdoor-loving Tommy on many adventures to come, including school trips.

His all-terrain buggy is so comfortable that Tommy will happily stay in it and play with his toys, eat his food and even go to sleep in it.

Children Today supported the family with help towards the cost of the life-changing equipment. The remaining funds were raised following an appeal, which the children’s disability charity launched for the teen.

Jo said: “To everyone who donated to Tommy’s fund, thank you from the bottom of our hearts.

“The all-terrain buggy has helped Tommy enjoy new experiences and for that we are truly grateful to each and every person.

“The happiness and also the comfort this provides Tommy is something so special and without you all that would not be possible. And 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.

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