Georgina Pearce, centre, with sister Jessica and family friend Donna Allen outside the extension that will allow the Niemann-Pick Type C sufferer to remain at home. (Picture by Peter Frankland, 0842495)
THE generosity of islanders means a local family’s wish will soon come true.
When Ian and Tania Pearce discovered their teenage daughter had a rare and incurable condition, their world fell apart.
But islanders rallied around and fund-raising has helped Georgina, diagnosed at 11 with Niemann-Pick Type C, a form of children’s dementia, to stay with her family.
Registered charity Georgina’s Gang was launched at the beginning of the year to raise money for an extension to be built at their Castel home which would allow her to stay with her family as the degenerative condition progresses.
Islanders have raised more than £20,000 for the appeal, launched in the Guernsey Press. A percentage will go towards research into the condition – a cheque for £1,500 has already been presented to the Niemann-Pick disease group (UK) – and work on the extension is well on its way to completion.
‘There is no way I could ever thank people enough. I can’t believe how humble it makes us feel,’ said Mrs Pearce.
Work began on the extension on 23 May and they hope it to be ready by the end of this month.
Adapting their home was estimated at £150,000 but the cost is expected to fall as many islanders have given their time and services for free. The extension is now plastered and a specially-adapted shower is next to be installed in the wetroom with a hoist which can move between there and the bedroom. ‘When I think about how quickly it has gone up, it is unbelievable,’ said Mrs Pearce.
Georgina, who needs round-the-clock support, is now unable to get up the stairs and currently sleeps alongside her mum in the lounge. ‘It is very difficult at the moment because our family bathroom is upstairs. Things will be a lot easier when we have the new wetroom,’ she said.
Georgina, 13, is a pupil at Le Murier and Mrs Pearce said the school had been a real help. ‘Georgina goes hydro swimming so is using the shower there at the moment,’ she said.
Access to the new rooms will be via the dining room and video monitors will be installed, allowing the family to reduce the amount of time they have to check on their daughter during the night. ‘It is going to make a huge difference to Georgina. At the moment she is just living in the lounge,’ said Mrs Pearce.
Sensory equipment has already been bought with money donated by Lace. The charity group has dedicated its fund-raising this year to the cause. ‘Georgina is doing quite well considering. It is frustrating for her, but she is doing OK. She is still declining and her walking is becoming more difficult,’ said Mrs Pearce.
n A link to Georgina’s website can be found at www.thisisguernsey.com.
Article posted on 16th September, 2009 - 1.00pm
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