Brothers suffer from rare syndrome with no treatment available in Ireland
Drogheda hardware company, Wogan Build Centre, has launched an appeal to help a local family who are facing huge ongoing problems with sickness.
Drogheda brothers Brandon (20), Keane (19) and Kallum (15) Barrett live with their parents Mary and Ian at the Highlands Estate and all three of them suffer from a rare condition called Ehlers Danlos Syndrome (EDS).
I’d never heard of EDS either so I googled it and found out it is “a connective tissue disorder which can affect the entire body, a disease that weakens the connective tissues of your body. These are things like tendons and ligaments that hold parts of your body together.”
It sounds pretty awful but Mary Barrett doesn’t need Google to understand all about it and just how profoundly EDS has affected her sons, herself and her husband.
Because the condition attacks all of the patient’s internal organs it is nigh on impossible to find a specialist that can deal with it because it needs know-how and special skills over a wide spectrum of expertise.
Sadly that means there is nowhere in Ireland that the Barrett Boys can receive the treatment they so badly need.
Even though there is no treatment available in this country, the Barretts receive no financial help from either the HSE or any department in the Irish Government towards the cost of travelling or for treatment in hospitals in the UK.
Quite apart from the medical bills there is hotel accommodation and travelling to consider also. That’d be fine if it was a one-off situation but each of the boys may have appointments several times a year. They try to organise it so the trips coincide but that’s not always possible.
Quite apart from the threat it poses to the lives of their sons EDS has literally taken over Mary and Ian’s lives also.
All three boys must travel to various hospitals in London several times a year and when emergencies arise also. Kallum has also started to attend a hospital in Leuven Belgium for severe gastro complications.
“We have spent years fighting for our boys all their organs are affected, right down to their eyes and teeth” Mary told Drogheda Life. She added that she might have to attend up to 12 medical appointments in a week in four counties and maybe six different hospitals.
It’s not only the numerous hospital appointments and the suffering they witness their boys enduring on a daily basis that the Barretts have to put up with either.
Because one of the boys got to the stage when he could no longer make it up the stairs he started sleeping in what was the sitting room of their home and Mary and Ian had to find the money to build an extension. Once again they received no official assistance for the cost.
The only thing that has kept the Barretts going over the years is the kindness of strangers who have donated to fundraising appeals.
For the latest of these, Wogan Build Centre are raffling a Sorrento Egg chair (see photo). Tickets are just €5 and you can buy as many as you like in the Wogan Build Centre store or make a donation for as much as you can afford at their Go Fund Me page. https://gofund.me/ce039977
