Decorator to take on a 72-hole golf marathon for nephew with rare genetic condition

A Bexley decorator is taking on a 72-hole golf marathon to raise funds for his eight-year-old nephew who has a rare genetic disorder.

Albert Said, of Pilgrims Hatch, Bretwood, has the extremely rare genetic disorder Pitt Hopkins syndrome. He cannot crawl, walk or talk and relies on adults to meet all his daily needs.

Louie Callaghan, 34, of Albany Close, Bexley, and three of his friends will be taking on the golf challenge to raise money to go towards equipment and support Albert relies on, at the Royal Blackheath Golf Club, in Court Road, Eltham, on June 21.

Mr Callaghan said: “We’ll be starting at 4am, so as soon as it gets light, and hope to have completed it by about 9pm.

“Albert’s mum, Carly is my sister and I’ve never done any fundraising for him before, so I wanted to help.”

Office administrator Carly Said, 37, said: “Albert will always need support from different therapists and rely on equipment to help him become as independent as possible.

“We have already met our initial goal at £10,000 thanks to the generosity of our friends, family and community.”

But, Ms Said said that Alberts annual physio sessions alone cost £4,420 each year, and he often needs new equipment as he grows so costs are ongoing.

She said: “We’re incredibly grateful to everyone who has helped us with fundraising and of course we would like to thank Louie and his friends for taking this on for Albert.”

Albert’s family is being supported by children’s charity Tree Hope, which helps families fund for children with healthcare needs where the NHS cannot.

Tree Hope chief executive Becky Andrew said: “We are delighted to be supporting the Said family with their fundraising and wish Louie and his friends all the best with the golf challenge.”

To donate to alberts fundraiser or sponsor Mr Callaghan visit: https://www.justgiving.com/fundraising/72-Hours-Golf-2024

Pictured top: Albert Said (Picture: Carly Said)