Dermot Devlin from Greencastle is good craic. He also is very determined and not afraid to take the fight to the doors of political representatives and community leaders. However he needs a Confederate flag. Let me explain…
Dermot, or Ziggysego as some social website warriors know him, has a very rare medical condition known as Morquio that affects bone development and restricts growth. It is so rare that only 105 children and young adults in the UK have it. Untreated, it leads to the progressive and chronic deterioration. In typical Ziggy style he recently wrote to all the MPs in the North as well as PUP leader Billy Hutchinson and the leaders of the main political parties in the Republic asking that the life-giving drug Vimzim be made available here. Otherwise he is in serious diffs.
“What has this to do with a Confederate flag?” I hear you ask. Be patient dear reader.
We are all disabled, it is just that some disabilities are more obvious than others. Despite his physical condition which includes dwarfism and the use of a motorised wheelchair, Dermot is not one to mope about feeling sorry for himself. This is a man who went to a comedy show and laughed while other members of the audience drew their breath when funnyman Mike Wilmott asked whether Ziggy thought he was a ‘big man’ because he was drinking a pint. “I went to see the show and knew what I was getting, I don’t want to be a special case, “ he said.
I was on safe ground after his recent illness when without thinking, I said, “It’s good to see you on your feet again.” Dermot has more serious business to attend than getting hung up on mawkish political correctness.
When Donegal got to the All Ireland final in 2012 we hatched the cunning plan and wrote to Croke Park for two tickets for the disabled section, myself of course as his carer. Unfortunately the suits saw us coming and replied that the facility was only available to ‘patrons’ from the competing counties. T’was worth a try.
Dermot is what one calls a go-to man who works and leads as full a life as any of us, health permitting. He has been a bane of establishments across the North highlighting poor access facilities for wheelchair users on the website he initiated, ‘My Way Access’ which earned him a Spirit of Northern Ireland nomination. Council, business managers, shop owners and public representatives have been made very uncomfortable when Dermot rolled up to the huge step at their front door. The website leads the charge for dozens of wheelchair users.
I’m getting to the Confederate flag! Trust me!
An activist in the truest sense, however he is under pressure and not been enjoying the best health in recent times. In the last year he has experienced extreme hits to his respiratory system, prolonged stays in hospital including intensive care and the need for a ventilation machine at night which aids airway clearance and cough augmentation.
He is part of a UK wide campaign that highlights why the Vimzim treatment needs to be approved for himself and others. Sarah Long (44), a friend of Dermot from Bath in England, had access to the drug on a trial basis and it stabilised and greatly enhanced her standard of life. The drug was withdrawn last week and she faces a marked deterioration in her health, having to go into a care home and her life expectancy being greatly limited. Little wonder Dermot who is 35, is kicking down doors in a bid to get the life-saving/life-enhancing drug.
The Society for Mucopolysaccharide Diseases (the MPS Society) has stated, “Untreated individuals with Morquio deteriorate steadily resulting in diminished independence, decreased endurance, impaired quality of life and early death.” It added, “There are no alternative treatments available.” The cost of the licensed drug Vimzim can be reimbursed from the health services in over 20 countries, including France, Germany and the Czech Republic.
The UlsterHerald has highlighted the plight of Dermot and his friends. However despite being made aware of the issue, it seems daily provincial newspapers are not interested.
While the media does fabulous work, it can also be very cynical when deciding what sells. When blue eyed blond daughter of middle class professionals Madeleine McCann disappeared the press was all over the story. Her parents never called her ‘Maddie’, that was a tabloid invention. It is a tragic tale but other children from Britain have also disappeared and did not get the same coverage.
In recent weeks sheets in local provincials have dedicated almost a full page on objections to a ‘sexual freedom’ event, idiots being injured in a street bull run in Spain and a full page on the Pope being presented with a GAA top. There has been no room at the inn for Dermot and his friends though.
In Belfast a gobsh*te speeled a telegraph pole to erect a Confederate flag. That warranted a lot of newspaper coverage including a follow-up complete with a photograph of the same flag being removed.
We need a clip-on Confederate flag to attach to Dermot’s wheelchair. That should get their attention!