Barrett boys need your help
Local family with three sons suffering from rare condition staging Ballyboughal fundraiser in June
A local family with three sons, all suffering with a rare and serious medical condition, are calling for local support for their annual fundraiser which takes the shape of a giant golf classic on June 22 at Hollywood Lakes
Ballyboughal native, Ian Barrett and his wife, Mary have three sons who are all affected by Ehlers-Danlos Syndrome. The rare condition is the in fact, a group of disorders that affect connective tissues supporting the skin, bones, blood vessels and many other organs and tissues in the body. Defects in connective tissues cause the signs and symptoms of these conditions which range from mildly loose joints to life-threatening complications.
But hat medical dictionary definition falls a long way short of describing the toll the condition can take on families affected by EDS, according to Ian Barrett.
Ian explained that his sons, Keane and Kallum have Type 1 EDS while the boys' brother, Brandon, has Type 3.
The boys' dad said: 'It is very rare to have 2 different types within the one family. There are no EDS specialists in Ireland which makes this even harder for the family both financially and emotionally with travelling for their care.
'Brandon is 17 at present and suffers from it plus a thing call Postural Orthostatic Tachycardia Syndrome (POTS) which is a heart condition which is seen with EDS. It causes him to black out and have dizzy spells. He has just had his shoulder stabilized in UCLH in London after a two-year wait with daily dislocations.
'His shoulder surgery could not be done here due to the fact his was a rare type as it was his shoulder blade. Top surgeons in Ireland have only seen around two people with his condition and said that only a surgeon in London could do it. I
't was operated on in January of this year and within two days he was released to the hotel but then four hours later, his POTS kicked in and he blacked out collapsed and dislocated his knee. At present he is immobilised in his shoulder and also still in a brace on his knee and this too needs further treatment. He will need over 12 months of rehab on his shoulder to see if it was a success. He also suffers with some gastro problems and some dermatology problems too, due to EDS.'
Kallum at aged 12, is the families major concern at the moment.
'Ian explained: 'In January of 2017, he had life saving surgery in Great Ormond Street Hospital London for malrotation of his bowel. Kallum's major problems are gastro related from his oesophagus all the way down.
'He is on a very restricted diet as he is wheat, gluten, dairy, egg, soya and nut free and is allergic to them all. Kallum has very bad allergies and not just to foods They think he has a condition called Mast Cell which is severe. He is in pain 24 hours a day with constant nausea and vomiting.
'He is also in pain from adhesions in his stomach which have to be constantly monitored for the rest of his life as this can bring back a malrotation, again of his bowel. They are finding it hard in Great Ormond Street Hospital to find a way to make him feel better as there is no cure but are trying out everything possible.'
Ian added: 'For the past two years, Kallum has been living in the sitting room as he can't do stairs anymore. His mother, Mary sleeps on a sofa beside him as he can be very sick during the night.'
As well as trying to deal with the on going medical expenses the family are trying to get planning approval to build an extension to accommodate Kallum's requirements in the future.
Keane at 16, who is also autistic suffers too with POTS but a bit worse so is on stronger heart medication than his brothers. Keane also suffers from bleeding problems for which he takes a lot of tablets daily but still needs minor surgery every three months.
Ian said: 'Being autistic adds an enormous amount of difficulty to his situation as he has a very high pain threshold which can make major symptoms and leave us getting his treatment later than we should.'
If anyone is interested in helping out this family you can donate on https://www.idonate.ie/BarrettBoysEDS. All their travel for treatment is self-funded as none of it is covered by the HSE and by fundraising for which the family are very appreciative of.
They are holding a Golf Classic in Hollywood Lakes in Ballyboughal. The date is June 22 and it is a 3 Ball for €120. There are great prizes up to 7th place. There is also a raffle on the day with some fantastic prizes for €5 a ticket.