Leo's story

"It's a birthmark and epilepsy - it's not going to harm anyone"

The staring he can understand, the jokes and taunts he has grown accustomed to, but when people cross the road to avoidgoing near him, it really hurts Leo Deadman.

"I hear a lot of whispers in the street about me," the 36-year-old said. "People pull their kids away from me as if to say 'I can't let my children go near you because they might catch something'."

Leo does not have an infectious disease, but he does have an obvious and large birthmark on his face and suffers from up to ten epileptic seizures a day, some of the more obvious symptoms of his condition.

He was born with a rare brain condition, Sturge-Weber syndrome, which is not fully understood by doctors and has no known cure.

Suffering from regular epileptic seizures, he has struggled to find a job with an employer who is able to accommodate him.

But despite these setbacks Leo is now trying to raise the profile of people with Sturge-Weber syndrome and is helping to raise funds for a support group for the families of children with the condition.

"When I was growing up there was no charity to help me but my main aim now is to make sure nobody else goes through what I have been through," Leo said. "I think it is something that people need to be aware of. Anybody could have a kid like me. There is no telling how or why it happens."

He is now helping to raise the profile of the Sturge-Weber Foundation UK and raising money for the group.

The UK group has around 250 members, and aims to provide support and help for the estimated 1,000 people in the UK who have the syndrome.

The charity also helps fund the cost of research into the condition, about which little is known, and acts as a support group for families.

A dedicated clinic at Great Ormond Street Hospital also offers medical advice to the families of children born with Sturge-Weber.

The foundation’s chairman, Jenny Denham, who has a daughter with severe Sturge-Weber herself, paid tribute to Leo’s efforts.

"He tries really hard for us," she said. "He has written a lot of letters, and I write a covering note to go with them, but we haven't got a patron as yet."

Mrs Denham said the group’s members often found it difficult to raise money or ask for help from grant-giving organisations. "We are struggling as a charity because we only have four trustees. I do most of it but I work as well," she said. "But I wouldn’t do it if I didn’t enjoy it."

Mrs Denham also puts together the foundation’s newsletter and website, which keep its members up to date with the latest developments in treatments and details of group meetings, and offers advice on coping with the syndrome.

They also include some heart-rending human tales of children dealing with their condition.

Although the group was founded too late to help Leo during his childhood, he is keen to do all he can to help the Sturge-Weber Foundation.

He said: "They are quite under-funded and not very well known so people don't think of them when they are giving money to charity, and they are still looking for a patron."

He has written to several well-known figures, including Prince William, the Earl and Countess of Wessex, the Duchess of Gloucester and TV couple Richard Madeley and Judy Finnigan.

But although all have replied, none have offered to become the foundation’s patron.

At his home, a flat in Basing Drive on the Tices Meadow estate in Aldershot, with the curtains drawn to keep out the epilepsy-inducing sunlight, Leo said he was often hurt by people’s reactions to his condition.

As a child growing up in Basingstoke he had to wear a rubber helmet on his head at all times in an effort to control his seizures — a look which attracted a predictable level of taunts and bullying from his classmates.

Moving to Cove at the age of 12, he went to Samuel Cody School in Lynchford Road, North Camp, before leaving at 16 to attend a special school in Sussex.

After leaving there at 18, Leo has struggled to find work in his adult life, which he puts down to problems stemming from his appearance, educational difficulties and epilepsy.

He has had a course of laser treatment on his 'port wine' birthmark to reduce its appearance, but only with limited success, and he doesn't like to use prescription make-up to camouflage his birthmark.

"It does get to me sometimes," Leo said. "People do go on appearances first, and I don’t try and hide my appearance. This is me. I am this, but it doesn’t make me any less of a person."

Leo says the most debilitating part of his syndrome are the epileptic seizures, which happen around "nine or ten" times a day and for which he has to take a cocktail of strong antiseizure drugs every day.

"It is like being hit by a heart attack or a stroke," Leo said. "Earlier this year I was standing at the bus stop, feeling quite good that day. Then with no warning sign I dropped into the road," he said. "Luckily, there wasn't anything coming along the road at the time, and two guys saw me and helped me up and asked if I was
alright."

In 2002, Leo found a job clearing tables at a cafe in Princes Mead, Farnborough. He said: "It was OK, because I was earning money, but I didn’t want to stay wiping tables for the rest of my life."

He now hopes to find work helping out at a day care centre or helping children in some capacity, but realises there are a lot of barriers between him and his dream which he needs to overcome.

Leo said: "I haven’t had the necessary training or been to college, and it is difficult to gain on-the-job training any more. If people will accept me as I am I could still be of value to them. I don’t like to be told my limitations — I prefer to be challenged."

For more information about Sturge-Weber syndrome, or to hear about the work of the Sturge-Weber Foundation UK, visit its website at www.sturgeweber.org.uk.

Author: Pete Castle. Reproduced by kind permission of the Aldershot Mail and Surrey Advertiser.