A severely disabled one-year-old has been able to leave hospital for the first time in eight months to spend a few precious hours at home, thanks to the emergency loan of a specialist buggy from a disabled children’s charity.
AJ, from Congleton, has Spinal Muscular Atrophy Type 1, a life-limiting condition which causes progressive weakness in all muscles. As a result even breathing and swallowing is difficult for AJ, so using a standard buggy meant his airways could become blocked if his head moves forward, causing him to suffocate.
As well as being supported in just the right position, AJ also needs vital medical equipment with him at all times, including oxygen, a sats monitor, feeding pump and suction machine, which need a specialist buggy to accommodate them.
Without this the family have been trapped in Macclesfield hospital, unable even to take even a quick walk outside since December.
Now, thanks to the emergency loan service provided by Newlife the Charity for Disabled Children, parents Aaron Davies and Gemma Gregory were able to take AJ home for a few amazing hours together.
Dad Aaron said: “We went home over last weekend for a few hours at a time so we can get used to looking after him at home – but were only able to go home at all because of the specialist buggy from Newlife. It can anchor into the ambulance so it was safe for AJ to travel.
“The buggy is amazing, it’s forward facing so we can keep an eye on him and has room for all his equipment. We are still learning all the things it can do!
“It also means we have been able to take AJ out to feed the ducks, into town to the toy shop and visit a park, normal everyday things we haven’t been able to do for so long.
“You wouldn’t think having the right buggy could make such a big difference but it’s improved our lives so much!
“Now we are looking forward to the day we can take AJ home for good.”
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: “We are so happy we have been able to help AJ leave the hospital ward so he and his parents can make these memories together.
“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 AJ you can make a donation here: www.newlife.support/GiveEEL