SPORTSMAN'S DINNER - Friday March 19th 2010 - Nissan Sports Social and Conference Centre In aid of the Niemann-Pick Disease Group (UK) and In memory of Lucy Mathieson 27.05.03-29.09.07.   After Dinner Speaker Joey Jones former Wrexham, Liverpool and Chelsea footballer, capped 72 times by Wales and multi-award winning comedian Rudi West.      Tickets: £25.00 per head/£230 for table of 10

Lucy Mathieson was diagnosed with Niemann-Pick Disease Type C at just five weeks old.  This rare, life-limiting condition most often affects children, and there is currently no treatment or cure. Due to its rarity, most people, including medical professionals know little about the disease. In order to learn more about the disease, Lucy’s parents contacted the Niemann-Pick Disease Group (UK). They were offered practical and emotional support, as well as information about the condition, and were able to talk to other families in the same situation, which was a great help.
 
There are three recognised forms of Niemann-Pick Disease, Niemann-Pick Type A, B and C.  Niemann-Pick Type A and B are caused by an enzyme deficiency, causing a build up of toxic materials in the body's cells. In Niemann-Pick Type A this accumulation occurs very quickly, an affected child will usually die before reaching three years of age.  Niemann-Pick Type B does not affect the brain and, although growth may be slow, those affected will survive into adolescence or early adulthood, but not without experiencing health problems

Lucy had Niemann-Pick Type C (NPC), which is not caused by an enzyme deficiency, but the end result is the same; an accumulation of materials in the body's cells.  The brain and other organs are affected, leading to progressive intellectual decline, loss of motor skills, seizures and dementia.  Speech can become slurred and swallowing problems may develop, in the later stages the child will be tube-fed.  Affected children do not usually survive into adulthood.  Lucy lost her battle with NPC at just four years old, suffering many distressing symptoms throughout her short life.

In memory of Lucy, and to help other affected children, her family and friends continue to raise awareness and funds to support the work of the NPDG (UK) – work that will bring hope to future families affected by the devastating Niemann-Pick diseases.

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