THE family of a boy with a condition so rare, he is the only known person in the UK to suffer from it, is hoping to raise enough cash to fund a specially adapted trike.

Harley Reynolds’ family need the trike to allow them to spend quality outdoors time together.

The 12-year-old, who has severe learning difficulties, has outgrown his old Tomcat trike - which he’s had since he was five - as his feet no longer fit the pedals.

Harley, who lives with his mum, dad and brother in Great Wakering, has started to pedal for the first time in the past year.

As the youngster has low muscle tone, cycling is a great way to strengthen his muscles while also having fun outdoors.

Harley, who is partially sighted, non-verbal, and has severe reflux, has an extremely rare condition which hasn’t yet been named in the medical world as he is the only one in the country with it.

Maldon and Burnham Standard:

Pals - Harley, left, with his brother

The condition affects his fine motor skills and his spine. These issues have only just come to light as he approaches his teenage years.

Lynne, Harley’s mum, said cycling and swimming are the best forms of exercise for him to prevent his calf muscles from tightening and his legs from stiffening.

But, with current Covid restrictions in place, many pools are closed or have reduced opening hours.

Mum Lynne said: “Cycling is the only form of exercise he’s able to do quite happily.

“The trike is a very big thing for us at the moment to give him some exercise and to get out and about in the fresh air and to do things together as a family.

“It would mean everything to have the new trike, it’ll just mean we can get out and do what families do as there’s not that many things that we can actually do together so it will be amazing.”

Charity Children Today handed the family half of the costs for the trike with a £1,747.50 grant. But the family still need a further £1,747.50 to fully fund Harley’s life-changing trike.

The Tomcat trike, which would be specially adapted to fit Harley, can attach to another bike which will make it easier for the family to go out together and it will allow him to have a break from pedalling when he gets tired.

As Harley is non-verbal, his mum described how he can get frustrated when trying to communicate, adding: “As he’s not able to talk I think the trike will help in that way too.

“By having something comfortable to sit in that fits him well, it’s only going to help his mental wellbeing in a big way.” To make a donation, go to