Aiming to provide buggy for boy with rare condition

A fundraising campaign has been launched to buy a new buggy for a 13-year-old with a rare disease.

The family of Harley Smith, of Farndon, are planning several fundraising events.

He was born with nicolaides-baraitser syndrome (NCBRS) a very rare condition with around only 75 cases reported worldwide. It is typically characterised by intellectual disability, seizures, short stature, sparse hair, distinctive facial features, short fingers and toes, and prominent joints of the fingers and toes.

Language is particularly limited, with at least 30% of affected people, including Harley, never developing speech.

Harley, who wears aged seven clothes, has outgrown his current buggy, which he has had for just over two years, and is in need of a more sophisticated, three-wheel version, which will last him much longer.

His mother, Mrs Lisa Smith, said: "He quite frequently flips his current buggy, which can cause damage because he has brittle bones.

"He is only 13 and has had two broken arms, a broken foot and a dislocated elbow.

"The new buggy would have three wheels and a wider axle, making it much more difficult to tip over.

"The one he currently has we brought ourselves and that was £500.

"He needs a new buggy but it is just too expensive."

Mrs Smith said wheelchairs, available on the NHS, were unsuitable for Harley.

"He sleeps a lot due to his medication and because the back of a wheelchair only comes up to his shoulders his head rolls back. They are also extremely difficult to get over certain terrain if we were to go away, for example," she said.

Due to the limited nature of NCBRS worldwide there is not enough evidence to form solid research, and Mrs Smith said there is no definitive life expectancy.

"There is someone in Australia who passed away at 19 but then another person in Skegness, who is currently 34, so it can range quite significantly," she said.

Mrs Smith is part of a Facebook page that includes family members of others who have NCBRS, and she said it helped to share experiences.

The family also goes to Manchester once a year to meet other families, who travel from as far away as Australia.

The fundraising campaign has been set up by Mrs Smith’s son’s father-in-law, Mr Robert Macrae-Clifton.

Mr Macrae-Clifton frequently does fundraising activities for Newark Orchard School, and is aiming to raise £2,500.

Anything raised over the cost of the buggy will be donated to the Orchard School.

Planned events include a music festival, Harfest, which will take place in Newark and feature local and national bands. The date and venue are yet to be decided.

When Harley has a new buggy, his current one will be donated to a three-year-old in Birmingham, who has Down’s syndrome.

An online crowdfunding page has been set up, which currently stands at more than £1,000 and can be found at: https://www.crowdfunder.co.uk/harleys-buggy