Ashford mum’s run for ‘superstar’ son
An Ashford mum took her long-running fight for awareness and funds to support more children with a little-known chromosome disorder to the streets of London.
Zoe Pryce was backed by colleagues and UK Power Networks to raise more than £500 for the charity Max Appeal in the 10km Vitality London, past London’s most famous landmarks including Big Ben, St Paul’s Cathedral and Buckingham Palace. The network operator offers employee match-funding up to £100 for staff taking part in fundraising events.
Max Appeal was founded by parents of children with DiGeorge syndrome (22q11 deletion), caused by missing or duplicated genes on the 22nd chromosome. Symptoms vary widely including heart defects, immune deficiency, learning disabilities, and speech issues.
Zoe, who works in UK Power Networks’ capital programme team, said: “I ran for Max Appeal for my son, who’s a superstar. Without the charity, I'm not sure I would have coped with his diagnosis when he was just four years old. Now he's almost 12 and absolutely thriving! He copes well with adaptations, and I treat him the same as his younger brother.
“From a parents’ perspective few people know about 22q11, even doctors. This means appointments can be symptom-led, rather than looking at the whole condition.
“I would like to see more awareness, particularly among medical and educational professionals, to remove barriers when help is needed. It shouldn’t be a fight to get what we need.”
Paul Wootton, founder trustee and treasurer for Max Appeal, said: “Max Appeal is extremely grateful to Zoe and the support from colleagues and UK Power Networks for taking the opportunity to raise much needed funds and at the same time raise awareness of a common rare deletion affecting 1 in 1,500 live births in the UK.
“We are very much reliant on fundraising support from member families to continue with our mission to support families affected by this condition and educate medical and educational professionals who come into contact with those affected on a daily basis.”
To support Zoe’s fundraising efforts, visit her fundraising page.