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Wrexham youngster Lily to complete 10-mile fundraising walk to help her grandad

Published date: 20 May 2017 |
Published by: Staff reporter
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A girl will put on her walking boots to raise awareness of a rare nerve disorder which has affected her grandfather.

Lily Griffiths, 10, of Clos Ogwen in New Broughton, will venture out on a 10-mile sponsored walk through the Ceiriog Valley on June 4 in aid of the Huntington’s Disease Association, after her grandfather was diagnosed with the condition.

Her proud mother Rachel Griffiths said: “My dad has been diagnosed with Huntington’s Disease and it’s not really a well-known disease, so Lily just wanted to make people aware of it and she wanted to do something for her granddad.”

The Bryn Alyn School pupil will walk from the Poacher’s Pocket in Chirk along the canal to Chirk Tunnels, before going past Pontcysyllte Aqueduct to the Telford Inn and back.

Huntington’s Disease, also known as HD, is a genetic disorder of the central nervous system that affects around 20 people in Wrexham county and eight in Flintshire.

It is estimated that three to four times that figure are at risk in each county.

HD usually develops in adulthood and affects movement, feelings, thinking, speech and eating, which get progressively worse over 15 to 20 years until the person needs full-time care.

Anyone with a parent who has HD has a 50/50 chance of inheriting the gene which causes the condition.

Lily, a student at Tetsu Nushi Karate Club in Brymbo, will be joined by sensei Ian Nash, Dan Challinor from the club, as well as other members.

The youngster has been honing her skills at the club for the past year, reaching the level of blue belt, and she is due to try for her purple belt in two weeks.

The walk is not Lily’s first charity fundraising endeavour, as she raised £2,000 for the Little Princess Trust in 2015 by having her hair cut short.

Clwyd South MP Susan Elan Jones was so touched by Lily’s efforts that she visited the youngster at her family home.

Mum Rachel told of her pride at Lily’s fundraising and added that her son Charlie, seven, donated pocket money for his sister’s sponsored hair cut and this time around has collected donations from neighbours.

Rachel said: “Lily said, ‘I would do anything for my granddad’ and she’s prepared to do the walk – and I think it’s nice that the karate club are supporting her as well.

“It’s absolutely lovely. They have given out sponsor forms to everyone who comes to the club. They’re very supportive of her.”

Lily’s father Mark Griffiths, 45, has set up a Just Giving online donation page for the sponsored walk.

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