A charity has launched a fundraising appeal to buy a portable hoist for a disabled teenager from Byfield.
Harriet Margieson has a rare and painful condition and needs to be hoisted in and out of her wheelchair but few places have specialist equipment.
Newlife, The Charity for Disabled Children, is hoping donations will help buy the £1,655 portable hoist which would give the 13-year-old much more freedom.
Her mother Jane said: “We’re really stuck at the moment and end up staying local so we can go home to change her.
“We used to go to the same places again and again where we know they have somewhere we could use but even these places are now out of bounds as I can’t lift Harriet any more.
“However, we’ve been able to try a portable hoist so we know it’s just what we need so that Harriet can enjoy discovering new places with her sisters.”
Harriet has Aicardi-Goutieres Syndrome, which has made her quadriplegic and causes severe muscle spasms, but her condition is even rarer as she does not have a learning disability.
She has undergone multiple operations and is due to go back into hospital for further invasive surgery in September.
Harriet needs to use a hoist for safety and is far too heavy to be lifted but the nearest sites Jane knows of that have the necessary facilities are Milton Keynes shopping centre and Toddington services on the M1.
They have two fixed hoisted installed in her bedroom and bathroom at home so a portable hoist would also be useful.
“This would mean Harriet could, for instance, get onto her sisters’ beds and stretch out on a blanket in the garden in the summer,” Jane said.
“Simple things that so many people take for granted.”
Statutory services say they cannot help with funding because they have installed fixed ceiling hoists in the family home.
Newlife head of operations Stephen Morgan said: “Harriet isn’t asking for luxury equipment – she needs a portable hoist so she can enjoy trips out with her family, like many other people her age.
“So we are appealing to individuals, groups, clubs and companies to help us help her.
“There are now more disabled children in the UK than ever before.
“Without Newlife, thousands would simply go without equipment such as this, but Newlife can’t do this alone.
“Please help us to help our disabled and terminally ill children.”
Telephone donations can be made by calling 01543 462777.
Any money raised over and above what is needed for Harriet will be used to support other disabled and terminally-ill children in Northamptonshire.