Life can be tough for Harriet Margieson. The 13-year-old, who lives in Byfield, has a rare and painful condition that has left her quadriplegic and causes severe muscle spasms. Yet despite her condition*, like every child she loves to get out and about to explore with her family.
Unfortunately this has become much harder for Harriet as she grows up. She has undergone hip and spine operations and is due to go back into hospital in September for further invasive surgery. She needs to be hoisted in and out of her wheelchair for safety and she is now far too heavy to be lifted – but there are only two sites locally that mum Jane Margieson knows of that have specialist changing facilities including a hoist and a changing bed. “That’s Milton Keynes shopping centre and Toddington services on the M1!” says Jane.
She added: “Lack of appropriate changing facilities means Harriet is severely restricted to where she can go. There are lots of disabled toilets around, but Harriet has to be laid flat to change her – and I’m not putting her on a dirty floor where everyone has walked and I am unable to lift her any more anyway.”
A portable hoist would solve their problem so she could go out wherever and whenever she wanted. 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.”
This equipment costs £1,665, but statutory services won’t help with funding because they have installed fixed ceiling hoists in the family home. Jane said: “Although we have two hoists installed at home, these are fixed and therefore can only be used where they are, in the bedroom and bathroom, so a portable version would also be helpful around the house. This would mean Harriet could, for instance, get onto her sisters’ beds and stretch out on a blanket in the garden in the summer . . . . simple things that so many people take for granted.”
Newlife the Charity for Disabled Children is now appealing to ‘local heroes’ to help make this happen for Harriet. You can help her by visiting www.newlifecharity.co.uk/northamptonshire or emailing firstname.lastname@example.org. Telephone donations can be made by calling 01543 462777.
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.”
Know that every penny you give will genuinely be used to save and change young lives in Northamptonshire. Any money raised over and above what is needed for Harriet will be used to provide specialist equipment for other disabled and terminally ill children in the county.
*Harriet has the rare condition Aicardi-Goutieres Syndrome. Her mutation of this syndrome is even rarer as she is not affected by a learning disability.
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