A CHELMSLEY Wood schoolgirl with a life-limiting condition can leave her bed and spend time with her family thanks to a specialist chair.
Jessica Collins has Muscular Dystrophy which means she is in constant pain, bedridden and often isolated in her room.
The condition affects every muscle in her body and causes them to gradually weaken.
The 12-year-old is unable to control her own head, stand or sit, has developed an ‘S’ curve in her spine and often has difficulty breathing.
Over the last few months the condition deteriorated and she became too weak to use an outdated specialist seat and equipment.
Jessica’s mum Donna said: “She is like a prisoner in her own room. She can hear myself and the rest of the family laughing together downstairs, but can’t be a part of it.
“Her bedroom is filled with medical equipment, including a lift and a hoist, so there’s no room for anyone else in there. She feels completely excluded.”
Jessica’s family contacted Newlife – The Charity for Disabled Children, who provided the family with a new specialist seat through its Emergency Equipment Loan Service.
The charity says the new seat provides the extra support she needs, but she can also move between rooms and be with her family.
Donna said: “It’s heart-breaking. But without the specialist seat from Newlife we wouldn’t have her with us, she’d be shut away in her room. We need those precious everyday family moments.
“Jessica can now spend a few hours with us each day and she is so much happier. It’s given her some quality of life back.”
Newlife provides emergency loans of specialist equipment for disabled and terminally ill children – and aims to deliver the equipment within 72 hours.
Newlife has provided equipment to more than 1,000 children in the last five years.
Carrick Brown, Newlife’s senior manager of the Care Services Department, said: “No child should have to wait in agony for equipment which can help them spend time with their family.
“When time is precious Newlife can step in and provide emergency loans while working with the family and local health services to ensure that a long-term solution is put into place.”
Last year Newlife says it provided 250 emergency loans of equipment, a 16 per cent increase on the previous year.
The charity says £1,100 would provide two children with the emergency equipment they need.
For more information or to make a donation, visit www.newlife.support/GiveEEL
