A 16-year-old Newark boy tackling an extremely rare condition needs your help.

Tommy McGonigle has a partial chromosomal deletion disorder and is missing over 100 genes — and is the only known child in the world with the problem, which means he can’t walk or talk and his body size resembles that of a six-year-old.

Tommy (above) is limited to where he can go because his wheelchair is unable to move over uneven ground.

Now his family has launched an appeal with children’s charity Children Today to pay for a life-enhancing, adapted buggy.

The all-terrain buggy, which would be specially fitted for Tommy, would provide the youngster and his mum with the ability to go to the beach together — something which Tommy last experienced properly when he was four.

Last year his mum carried him onto the sand but she struggled as he’s getting too heavy for her.

Children Today has awarded Tommy a £775.00 grant towards the cost of the Freedom for Kids equipment, but his family is still short of the £1,250 required to fully fund his life-changing buggy.

During the first coronavirus lockdown, when Tommy and his mum, Jo, were shielding, it became clear just how much the teenager adores being outdoors. Unable to understand why he couldn’t go outside, his mood changed drastically and he became very teary and agitated.

Jo said: “I’ve always tried to give him as many mainstream activities throughout his life and I feel that an all-terrain buggy will enhance these experiences for him.

“I want him to live a full, prosperous life and get out there as much as physically possible. He’s such a happy and social character and for him to be stuck inside more than necessary has had a negative impact on his mental health.”

The teen has ADHD, scoliosis, arthritis and microcephaly, which means his brain is underdeveloped because it’s smaller than average. His condition also affects his growth and his development.

He also has no muscle bulk and struggles to build fat because of his condition, so he gets cold very easily. Tommy and Jo are currently restricted to going out in fine weather conditions because his wheelchair doesn’t have a rain cover and his heart and lung condition means he finds it difficult to breathe when it’s windy.

The teen, who loves musicals, and his mum go on daily dog walks through their local forest but his manual wheelchair bounces him around on rough ground, making it an uncomfortable experience after a while.

Tommy’s granny, Mandy is confident the equipment, which is fitted with a rain cover, will change not just Tommy’s life, but Jo’s too.

She explained: “My daughter’s a single parent and works full-time. She’s been looking after Tommy with minimal support for a long time and it takes a toll on her energy levels.

“He has very little interest in toys and games, so he basically has no life when he’s inside the house apart from his mum jumping around to entertain him before she goes to work — and that tires her out.

“We wanted to find Tommy something that’s much more comfortable, appropriate for uneven ground and long days out. The buggy will be so beneficial for both his mum’s and his mental wellbeing. It’ll impact daily life for them massively.

“With the buggy Tommy will be able to experience things like any other child. It’ll allow him to have access to all places and to embrace every opportunity without worry.

“The biggest impact the equipment will have is on the amount of time they can get out for. At the moment they’re limited to half an hour, maybe an hour, and you have to consider how long he’s been sitting in his wheelchair — no matter how much we wrap him up there’s no wind protection and he gets cold.

“With the buggy he’ll be able to go out for the whole day and there’s reassurance in knowing he’ll be comfortable.”

Emma Prescott, charity director of Children Today Charitable Trust, added: “This piece of equipment will open up a world of opportunities for Tommy and his mum and is bound to give their mental wellbeing a big boost.

“This young man certainly sounds like a social butterfly and I’m confident this buggy will enhance his social skills even more as it will enable him to get out and about, whatever the weather. Tommy will be able to enjoy new found freedom, joy and will be able to watch the world go by from the comfort of his buggy, which is set to last him many happy years to come.

“Many families, like Tommy’s, have faced limitations on what they can do and experienced an increased sense of isolation during the pandemic. In the past year we’ve been inundated with enquiries and we would love to be able to fund every single application that comes in but we’ve had to make difficult decisions about who to allocate limited funds to and how much. This is why we’ve set up an online JustGiving page to fund the remaining amount for Tommy’s life-changing equipment.

“We depend on the generosity and kindness of strangers to continue doing what we do, and any donations small or large really do make such a big difference. So, thank you!”

To make a donation to help fund Tommy’s life-enhancing buggy, you can visit his online fundraising page at https://bit.ly/2R3XD3Y

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