Carnforth dad's fight to find son a cure

Four-year-old Finley Mayor was born with a rare liver condition, alpha 1 antitrypsin deficiency (AATD), in 2012, for which there is no cure.

His dad Rob Mayor, from Carnforth, has been battling to fundraise for answers ever since.

He said: “Overall Finley is a healthy, active boy but you just don’t know what the future is going to hold.

“His liver is deteriorating every year, it will affect his lungs when he is older, he will get emphysema.

“He gets tired a lot and has nose bleeds which is related to the condition because there is that much pressure in his spleen.

“But the fundraising keeps us going, I try to look at it as a good thing, it is bringing the community together. It is bringing a good thing out of a bad situation.”

Finley’s parents, Rob and Hannah, are both carriers of AATD. The inherited condition affects around one in 3,000 to one in 4,000 people in the UK.

Finley was born with jaundice which stayed with him for more than 12 weeks.

“It was still there, even in his eyes,” explains Rob.

“He kept sleeping all the time and went from Lancaster to Leeds hospital for more tests. When he was diagnosed I didn’t know anything about the condition and because he was getting better I thought oh maybe they will let him go.

“It wasn’t until we discovered the charity and went to one of their conferences that we realised how serious it was.

“That was when it hit home but we are thinking positively.”

Rob, Hannah and their friends and family have raised more than £20,000 over three years for Children’s Liver Disease Foundation (CLDF).

The charity takes action against the effects of childhood liver disease, providing information, emotional support, research funds and a voice for all affected.

Rob began his fundraising journey in 2013 and has been involved in a host of challenges including Born Survivor, the Great North Run, football tournaments, a 10k rat race, a half marathon, an assault course and most recently, a canoe challenge.

The team of 20, including Rob, completed the 34 miles from Guy’s Court to Longlands, to raise more than £1,500 for the charity.

Rob said: “The reason I fundraise, I was told there was nothing I could do, he couldn’t have any treatment so the only thing you can do is raise money to find treatment, a cure.

“I want to enjoy life with him whilst he is well.

“I never look too far into the future I just try and enjoy now.”

lYou can still support Rob’s canoe challenge by going to www.justgiving.com/fundraising/Guys-longlands16.