A disabled five-year-old from Chelmsford could be forced to have painful and costly hip surgery because the local health service won’t provide the specialist sleep system that could prevent it – despite it costing just £800.
Now Newlife the Charity for Disabled Children is calling on the local community to help raise the money for the equipment Evan Lang desperately needs to prevent his condition from worsening and so he can avoid having surgery.
Born at 29 weeks, Evan needed urgent lifesaving bowel surgery when he was just 10 days old. Although he recovered and was discharged at three months, doctors told his parents he had significant brain damage and would need support throughout his life.
Now five-years-old, Evan has Cerebral Palsy that affects all four of his limbs. He’s unable to walk or sit without help and although he has started to talk he requires round the clock support from his parents.
Evan also has hip dysplasia meaning his hips involuntarily dislocate if they’re not kept in the right position. During the day he has a specialist seating system which ensures his body and legs are kept in position at all times.
However every night his condition worsens because he doesn’t have a supportive sleep systems, so he twists and turns his body risking speeding up the need for excruciating surgery on his hips.
Mum Joanne said: “We have had very little support from day one – we were told our son had brain damage and left to figure our way through things by ourselves.
“The last thing we want is for Evan to have to face yet more surgery – he has been through enough already.
“We are very lucky that we now have wonderful Occupational and Physical Therapists through Evan’s school and they helped us find out about the sleep system – but because this equipment isn’t funded by the statutory services they recommended we get in touch with Newlife.”
Newlife’s Senior Manager for Care Services, Carrick Brown, said: “We desperately want to help Evan but we simply don’t have the funds available – so we’re calling on members of the local community to get involved to raise the £800 we need that will make an incredible difference to Evan and his family.
“The right kind of postural support can reduce the likelihood of conditions deteriorating and additional conditions like scoliosis from occurring – and of course can reduce the need for invasive surgery further down the road.
“We urgently want to get Evan the sleep system – if you can help by donating or fundraising then please get in touch today!”
In addition to Evan, Newlife has 32 other children desperately waiting for specialist disability equipment in the East of England. To help every single one of these children Newlife needs to raise £59,960.
Anyone able to help Evan should urgently contact Newlife on 01543 431444, visit the website at www.newlife.support/HelpEvan or email [email protected]
Money raised about the amount needed for Evan’s sleep system will be used to help other disabled and terminally ill children in the East of England.