Swimmers to take on water marathon for Leicestershire boy, 1, with rare 'butterfly skin'

  • ITV News Central reporter Rajiv Popat caught up with the open water swimmers in their final training session.

A group of open water swimmers are preparing for a wild water marathon to raise money for a Leicestershire boy with an incurable and painful disease. 

One-year-old Leo Statham from Hinckley, was born with Epidermolysis Bullosa (EB), also known as 'butterfly skin".

It's a genetic condition that causes skin to become very fragile and tear or blister at the slightest touch.

On Saturday 2 September open water swimmers who train at The Race Hub near Melton Mowbray, aim to complete 350 laps of a 50m circuit - the equivalent of swimming across the English Channel four times.

Leo's mum, Sarah, says his condition is still overbearing. Credit: Family photo

Leo's mum, Sarah, told ITV News Central: "When Leo was a few days old he got admitted back into hospital with blistering around his cord area. He kept blistering even though he was being treated accordingly. It wasn't until a doctor came in and had seen this before that they thought it could possibly be EB. We were heartbroken and were just numb for a few months at least. Even now it still becomes overbearing.

"We have to make sure Leo does not get any trauma to his skin when we're out as this can cause open wounds which can get very difficult to heal. We can't  take Leo into the sun or any kind of heat as his blistering and fragility increases this means days at home while It’s hot. Leo is on morphine when he is really bad as the pain is deliberating".

The swim will take place on Saturday 2nd September. Credit: ITV News

The team is raising money online and all of the funds raised will go to DEBRA, a charity that supports children with EB and their families.

The charity also funds research in the hope that one day a cure can be found - currently the condition is rare and incurable.

Organiser Martin Sarsfiled said: "We want as many of the swimmers that use the lake to get involved on the day of the event. We could have up to 100. Some will just do one lap of the course. Others will do multiple circuits. We aim to complete up to 350 laps and raise as much money as possible.

"This is a horrible and painful disease. It breaks my heart to see how these youngsters suffer. knowing there is no cure is devastating for parents. We just want to use our swimming to try and help".

One of the biggest supporters of the Charity is former Liverpool and Scotland footballer Graeme Souness.

Now 70, he joined others to swim the English Channel in June this year. Graeme has sent the DEBRA fundraisers in Leicestershire a personal message of support.

  • What is butterfly skin?

Epidermolysis bullosa, known as 'EB' or butterfly skin, is caused by a gene mutation which makes skin extremely fragile, causing blistering and tearing at the lightest touch.

A child with EB might have inherited the faulty gene from a parent who also has EB or they may be carriers.

The faulty gene can also happen by chance, when neither parent are carriers.

  • How can it be treated?

There is currently no cure for EB.

The NHS says treatment can help ease and control symptoms, and can improve quality of life.

It also says research is being carried out to try to find a cure, or at least more effective treatments, for EB.

"Initial results have been promising, but it may take several years until researchers come up with safe and effective treatments."