IT’S a horrifying affliction which often strikes the elderly.
But Lucy Mathieson was barely a month old when she was diagnosed with a devastating form of dementia.
The youngster was one of only a few hundred children in the world with Niemann-Pick, a rare, incurable disease which causes learning difficulties and memory loss.
As the inherited illness takes hold, speech becomes slurred and halting, muscles begin to weaken and sufferers may not even recognise those closest to them.
Lucy, who had the Type C form of the disease, died aged just four in 2007.
However, other families affected by the illness are now to be given much-needed extra care and support after a Wearside-based charity run by Lucy’s mum, Toni, was handed a cash boost. The Niemann-Pick Disease Group (NPDG), has been awarded £25,000 in recognition of its “outstanding work” to support people with the disease.
Beating competition from 400 other entrants, it was named one of 10 winners of this year’s GlaxoSmithKline Impact Awards.
Toni, from Fatfield, Washington, who is executive director of NPDG, said: “Lucy was very unusual in that the doctors diagnosed her condition at such an early age.
“She was only five weeks old when we were told that she had the disease. Most children are a lot older. We just wanted to make the most of the time we had with her.”
Formed by Scottish couple Jim and Susan Green, who had two of their three children diagnosed with the disease, NPDG supports families affected by the various forms of the illness.
“Winning an Impact Award is a great honour and recognises the dedication and support of families, staff, trustees and professionals,” said Ms Mathieson.
“As a smaller organisation, the award will enable us to strengthen our influence as a national charity and to enhance and further develop our support service for families.
“This, in turn, will lead to hopes of a brighter future for families affected by this rare and life-limiting condition.”
NPDG is the only charity in the UK that provides services to people directly affected by the disease. It provides a 24-hour helpline, and jointly funds a clinical nurse specialist based at Manchester Royal Children’s Hospital.
It has also recently piloted the use of video cameras and webcams in the homes of patients so parents can send video clips of their children from which health professionals can decide on the appropriate course of action.
Ms Mathieson, 42, said: “The group was set up with a relatively small amount of funding, but it has grown and grown over the years. It provides a unique service and is now established, attracting donations from bigger organisations and campaigns.”
The awards, run in partnership with health think-tank The King’s Fund, highlight the crucial role played by the voluntary sector in meeting health needs, often bridging gaps other services are unable to fill.
Lisa Weaks, Third Sector Programme Manager at The King’s Fund, said: “Without the group’s services, there would be a gap in the provision of care and support for those affected and a much higher demand on local health services.”