AN 11-year-old with a rare genetic condition has inspired his stepdad to take on a charity challenge to support the cause which has helped improve his quality of life.
Llanelli bank customer service adviser Garey Davies is putting himself through the paces in preparation to run the London Marathon in April to raise money for Whizz Kidz, which has helped his stepson Morgan who suffers from a rare genetic condition called Ataxia A0A1 and is confined to a wheelchair.
The condition affects Morgan’s balance, energy levels and results in muscle deterioration, poor co-ordination and slurring of speech.
Mr Davies who works at Barclays Bank, is so devoted to Morgan, his mum and her other two children, that he wants to do all he can to raise awareness of Ataxia A0A1 and the charity, which has helped with Morgan’s invaluable wheelchair skills, making his life more comfortable.
Speaking of his preparations leading up to the charity effort, Mr Davies said: “I’ve run about 29 half marathons but nothing like a full one.
“I’ve been trying to train two or three times a week although it’s not always possible with the family keeping us busy but have somehow managed to run 19 miles in one go so hope to reach my target within the next couple of months.”
Mr Davies and his own two sons, Rhys, aged 15 and 11-year-old Owen, together with his wife, Sarah Lemon-Davies and her two other children Mathew aged 13, and Joseph aged 8, are promoting his Everyday Hero page, which is raising funds for the cause.
Mr Davies who has set himself a target to raise £2,000, will have a ‘dry-run’ training session on a cross trainer at St Elli Shopping Centre in Llanelli on February 4.
St Elli Centre manager Andrew Stephens said: “Young Morgan is such a brave boy and we wanted to promote his stepdad’s run.
“It’s a rare condition and has such an effect on Morgan and his family that we hope people will become more aware and do all they can to help. Knowing our shoppers I’m sure they’ll be as supportive as possible.”
The family home has and continues to be adapted to accommodate Morgan’s special requirements, but his needs are on-going and Mr Davies has been running two or three times a week in readiness for his marathon challenge on April 23.
Experts say that some forms of ataxia are treatable, but in most cases there is still no cure.
For those who wish to help further, Mr Davies has set up a Just Giving page which can be found by Clicking Here.