The family of a teenager whose body resembles that of a six-year-old is struggling to pay for a buggy to improve their quality of life.
16-year-old Tommy McGonigle, who lives in Newark, has an extremely rare condition and has limited driving ability because his wheelchair cannot move over uneven surfaces.
The SUV, which was specially equipped for Tommy, would give the boy and his mother the opportunity to go to the beach together.
This is something that Tommy last really experienced when he was four years old and is a very special memory for the family.
Last year his mother carried it in the sand, but she struggled when it got too heavy to carry.
During the first lockdown, when Tommy and his mother were shielding each other, it became clear how much Tommy loves being outside.
Unable to understand why he couldn’t go outside, his mood changed drastically and he became very tearful and excited, his family said.
His mother Jo said, “I’ve always tried to give him as many mainstream activities as possible and I have a feeling that having an off-road vehicle will improve those experiences for him.
“I want him to live a full, successful life and be out there physically as much as possible. He’s so happy and social that being inside more than necessary has negatively impacted his mental health.”
Tommy, who cannot walk or speak, has a partial chromosome deletion disorder and over 100 genes are missing.
He has no muscle mass and has difficulty gaining fat due to his condition so he gets cold very easily.
Tommy and Jo are currently not allowed to go out even when the weather is nice, as his wheelchair has no rain cover. This is problematic for the family as he also suffers from heart and lung diseases, which means he has difficulty breathing when there is wind.
Lockdown was difficult for the Nottinghamshire couple as something as simple as a walk was problematic for them due to the colder winter weather.
The teen who loves musicals likes to walk the dog daily, but his manual wheelchair bounces him around on uneven ground, making it an uncomfortable experience.
Children’s charity Children Today gave Tommy a £ 775 scholarship to help fund Freedom for Kids equipment, but the family is still £ 1,250 short to fully fund his life-changing buggy.
Tommy’s grandma Mandy is confident that the equipment that comes with a rain cover will not only change Tommy’s life, but Jo’s as well.
She said, “My daughter is a single parent and works full time. She has taken care of Tommy for a long time with minimal assistance, which is a drain on her energy.
“He has very little interest in toys and games, so basically he has no life when he’s in the house other than his mother jumping around to entertain him before going to work, and that tires her.
“We wanted to find Tommy something that was much more comfortable, suitable for uneven ground and long days.
“The buggy will be of great benefit to both his mother’s well-being and his mental well-being. It will have a massive impact on her daily life.
“With the buggy, Tommy can experience things like any other child. This gives him access to all places and can take advantage of every opportunity without worries.”
The teen has ADHD, scoliosis, arthritis, and microcephaly which means their brain is underdeveloped because it is smaller than average.
Its condition also affects its growth and development.
Mandy added, “I think the biggest impact the gear will have will be on the time they can get off for.
“At the moment they are limited to half an hour, maybe an hour, and you have to think about how long he sits in his wheelchair, no matter how much we wrap him, there is no windbreak and he gets cold.
“He can go out all day with the buggy and it’s comforting to know that he’ll be fine.”
Emma Prescott, charity director of the Children Today Charitable Trust, said the device will “open up a world of opportunity”.
“This young man definitely sounds like a social butterfly and I am confident that this buggy will improve his social skills even further as it can be out and about in any weather.
“Many families, like Tommy’s, have faced limitations and an increased sense of isolation during the pandemic.
“Over the past year we have been inundated with requests and we would like to be able to fund every single application, but we have had difficult decisions to make about who and how much to allocate limited resources.”
To make a donation to fund Tommy’s life-improving buggy, you can visit his online donation page here