Twelve-year-old Jessica Collins has a life-limiting condition which means she is in constant agony, bedridden and isolated from the rest of her family.
Jessica from Chelmsley Wood has Muscular Dystrophy which affects every single muscle in her body. She’s 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 Jessica’s condition has deteriorated so badly she’s in too much pain to use the specialist seat she has downstairs or go to school, leaving her completely isolated.
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.”
Jessica’s nurse suggested the family contact Newlife the Charity for Disabled Children, who quickly provided the family with a specialist seat through its Emergency Equipment Loan Service which provides not only the extra support she needs, but can also move between rooms as its on wheels, so she can be as involved in family life as possible.
Donna said: “Birmingham Council are trying to provide another seat suitable for Jessica, but it’s a slow process and they can’t provide anything in the meantime. 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.”
“As Jessica’s condition is life limiting having time with her as a family is very precious. 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 is the only charity providing emergency loans of specialist equipment for disabled and terminally ill children, and aims to deliver the equipment within 72 hours. Newlife has provided urgently needed 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 provided 250 emergency equipment loans of equipment, a 16per cent increase on the previous year.
Just £1,100 would provide two children with the emergency equipment they need to save or change their lives. If you would like to help a child like Jessica you can make a donation here: www.newlife.support/GiveEEL