BATTLING Lee Turner is confined to a wheelchair, faces a daily ordeal of seizures and was hospitalised three times last year after suffering from pneumonia.
But according to his family, he is still a “happy-go-lucky” lad.
The community is rallying round the 14-year-old to club together to pay for a new £2,500 electric wheelchair to replace the NHS non-motorised wheelchair he has at the moment.
It will take pressure off his parents, Denise, 46, and Andrew, a 45-year-old printer, who are starting to find it a struggle to push the growing lad.
Lee, a pupil at Glendene School and Community Arts College, in Glendene School, Easington Colliery, was born with profound learning difficulties and cannot verbally communicate.
His family noticed he was not reaching the usual milestones, such as sitting up or walking until later than other children.
It was not until last year, when he was 13, that doctors diagnosed him with MECP2 duplication syndrome.
It is a rare condition usually caused by duplication of DNA in chromosomes.
Denise, from Gloucester Place, in Peterlee, said: “MECP2 is a rare life-limiting genetic disorder that mainly only affects boys, although we have found through research there are two female sufferers.
“The symptoms include profound learning difficulties, epilepsy, pneumonia, respiratory problems and low muscle tone.
“We are trying to raise funds for a wheelchair that will be nice and strong and help us to get about, it will probably be like an adult chair.
“He can walk around the house, but needs a wheelchair to go outside and on long trips.
“The syndrome means boys usually end up in a wheelchair permanently.
Denise, who is also mum to Andrew junior, 24, added: “Lee is happy-go-lucky and never complains or moans and never lets you know when he is poorly.
“He is the most loving little boy you could ever wish to meet.
“It breaks my heart to see him like this.”
The family has already raised £600 towards the cost of the wheelchair through holding a sponsored walk.
The Asda store, in Peterlee, is also helping with the fundraising drive and Lee is one of three causes that are being sponsored by the Surtees Road-based supermarket over the next two months.
And family friend Tracey Farry is planning to do a sponsored skydive to boost the funds.
Denise hailed the support coming from the local community, saying: “It’s quite surprising how nice people have been, they have been absolutely amazing.
“With this wheelchair, we will be able to get about with him a lot more.”
The family and their friends are also organising a children’s party on Thursday, at Easington Victory Club, in Seaside Lane, which is sold-out.
On Saturday, May 12, also at the club, there will be a race night from 7pm and tickets are £3.50.
On Saturday, May 19, Tracey plans to do the parachute jump at Shotton Airfield and needs help towards sponsorship.
Anyone who can help towards the fundraising drive can call Denise on 07818663660 or Tracey on 07857563913.