Steve’s running to help niece fight rare condition

Steve Holligan is the uncle of Eliza McKinney, who has Rett syndrome, and he will embark on the 13-and-a-half mile race later this month as part of the Edinburgh Marathon and Running Festival, to raise money for charity Reverse Rett.

Eliza was disagnosed with the condition – which prevents the three-year-old from being able to walk or talk – shortly after her third birthday last June.

The news came as a huge shock to parents Catherine and Ross, and Eliza’s mum told the Courier: “It was a massive shock to us when we found out she had Rett syndrome.

“It was probably the worst possible diagnosis because we had hoped that she would become independent as she got older, but we realised that she would need care for all her life – it is not a condition that will improve.” Catherine and friend Elly Douglas-Hamilton completed the Kilomathon at the end of March, and raised an impressive £2,530 for Reverse Rett, and now Steve is hoping to do his bit as well.

He will take to the streets of the Capital on the weekend of May 30 to raise much-needed funds for the charity that the family hope can eventually come up with a cure for the condition.

On his JustGiving page, Steve said: “Eliza did learn to crawl and knee-walk, but she can’t weight bear or walk. Slowly her hand function decreased and now, at nearly four, she is unable to spoon-feed herself and cannot help with dressing. She can’t wave, point or grip objects effectively.

“Eliza can’t talk and therefore can’t tell us if she is in pain, hungry or tired. She also can’t ask us any of the questions that she must want to, or say all the silly three-year-old things that come into her head.

“Her hand function isn’t good enough to communicate through signing, so we have to guess and anticipate her needs. She can often become very upset and we don’t know why. Please help us to give her the best chance.” To make a donation, visit Steve’s JustGiving page, www.justgiving.com/SteveHolligan