Jessica Collins (pictured) has Muscular Dystrophy, a disease which affects every single muscle in her body. It means that she is unable to stand and that she suffers breathing difficulties.
Over the last few months the 12-year-old’s condition has deteriorated so badly that she is now unable to use the specialist seat she has downstairs or go to school, which left her completely isolated.
Explaining the difficulties, mum Donna said: “Jessica 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.”
Struggling to get an appropriate seat from the local authority, the family heard that equipment might be available through Newlife – the charity for disabled children.
The organisation was able to arrange for a piece of kit to be provided through its emergency equipment loan service and because it is fitted with wheels Jessica is now able to move between rooms and, wherever possible, get involved in family life.
“As Jessica’s condition is life-limiting having time with her as a family is very precious,” said Donna.
“We will never get that time back. The loan of a specialist seat from Newlife means everything to us.
“Jessica can spend a few hours with us each day and she is so much happier. It’s given her some quality of life back.”
Newlife has provided urgently needed equipment to more than 1,000 children in the last five years.
Carrick Brown, from the charity, 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.”
To find out more about the charity’s work or to make a donation visit
www.newlife.support/GiveEELA
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