Football legend Graeme Souness demands action from MSPs to help schoolgirl with cruel disease

Football legend Graeme Souness last night visited the Scottish Government to demand it takes action to help end the suffering of little Isla Grist and hundreds like her.

The former Rangers and Liverpool midfielder has championed Isla to highlight her devastating condition, epidermolysis bullosa – a rare, painful disorder which causes fragile, blistering skin. He launched a fundraiser earlier this year for DEBRA, a charity seeking a cure for EB – known as butterfly skin – and joined a team to swim the English Channel, raising more than £1million.

Last night, he teamed up with Isla’s dad Andy and Falklands veteran Simon Weston at a reception at the Scottish Parliament where they appealed to MSPs for cash for research and to carry out trials for drug repurposing. Currently there is no government funding.

Ahead of the reception Souness, 70, said: “Someone has to help these children. There are no creams, there is no medication, there are no drugs we can give them to take away this constant pain and this constant itchiness.

“And every day is a groundhog day for them. Every day is more of the same pain, itchiness, not sleeping, having to have bandages changed and having to have ridiculous drugs like diamorphine. It is horrid. I think it is an absolute sin that we have not been able to help these children.

“I know it is a difficult time for everyone but the majority of people in the room tonight are parents and God forbid that any of them have experienced what any of these children have had to go through. I am asking those who are parents to have a look at this and, hopefully in the very near future, to make funds available and help us with repurposing.”

During a recent visit to Westminster, Souness met young people with a milder