INCREDIBLE STORY OF THE BARRETT BOYS
FIONA MAGENNIS SPEAKS TO MARY AND IAN BARRETT ABOUT HOW THEY COPE WITH HAVING THREE SONS WHO HAVE ALL BEEN DIAGNOSED WITH THE EXTREMELY RARE CONDITION EHLERS-DANLOS SYNDROME (EDS)
FOR Mary and Ian Barrett, caring for three sons with Ehlers- Danlos syndromes ( EDS), is a daily challenge.
The extremely rare condition affects the connective tissue in the body which means literally any part of the boys’ bodies can be affected on a daily basis.
Ehlers-Danlos syndromes is a group of inherited disorders that affect your connective tissues — primarily your skin, joints and blood vessel walls.
‘ Things can change from second to second, nevermind minute to minute,’ said Ian, who works in security at Dublin airport. ‘Connective tissue covers 95% of your body so there’s not much that excludes or escapes the symtoms.
‘ The problem we have is that there is no recognised specialist in this country so we have to travel to get the right treatment for the boys.’
For eldest son Brandon (16), even the slightest brush against another person can leave him with a dislocated shoulder while youngest son Kallum (11) has spent the past year of his life in the downstairs living room of the family home in Highlands after undergoing surgery to repair both his kneecaps which left him in a full leg brace for weeks and which still requires the use of a motorised wheelchair.
To add to the families worries, the condition is so rare that few specialists in Ireland are able to treat the boys. As a result, they regularly have to travel to Britain where the boys are treated at Great Ormond Street Hospital.
However, because the treatment is outside the state, the family are forced to fund the costs of this themselves.
‘Kallum is by far the worst affected, he has severe gastro problems and is on a very very restricted diet which is gluten, dairy, egg, nut and soya free and even to the extreme that he’s even coconut free,’ said Ian.
He explained that Kallum was diagnosed with a malrotated bowel and as a result of this and other complications related to the condition, he feels nauseous all day long. Despite being on a cocktail of medications to stop him actually being sick, the nausea and sickness is constant.
The operation needed to treat the bowel condition was carried out in the UK in January at a cost of €23,000 to the family.
Ian said the family have not received any monetary help with this from the HSE because the treatment was carried out outside the state.
‘ There are departments within the HSE that are absolutely brilliant, in particular the physio department in Temple Street. But with the gastro problems Kallum has we seem to be hitting a break wall, when it’s something they don’t understand we are left on our own.’
Brandon is currently waiting to be referred to the UK for surgery on his shoulder, which has been in a sling since last September.
‘His consultant here has referred him because he said that yes, which he has heard of the condition there are not enough people here with the relevant experience to do it and he’d rather the specialist have a look at him and see what needs to be done before he makes any decisions,’ said Ian.
The boys were diagnosed with the conditiona number of years ago but Ian and Mary first noticed there was an issue with Kallum when he was just a baby.
‘Kallum kept falling out of his standing at an early age, from about ten months onwards. He was very floppy was the best way to describe it. They initially thought it was Muscular Dystrophy. That was eventually ruled out and they kept saying he was just a clumsy child but we kind of sensed that there was more to it,’ said Ian.
‘ Then someone mentioned EDS and the consultant shot it down very promptly but when we came home and looked it up we read through all the symtoms and said ‘ that makes sense, that makes sense. All the boxes were ticked.’
After Kallum developed epilepsy like seizures at the age of six, tests showed he had some abnormalities on the brain.
‘At that stage he’d gone 14 days without sleep. He’d fall asleep and then within an hour, an hour and a half he’d develop these seizures. He was also having nosebleeds all the time that we couldn’t stop. It was terrifying. Eventually we decided to go to the UK to see a specialist there, Profressor Rodney Grahame.
While they were relieved to
a diagnosis for Kallum, Ian and Mary were shocked to discover their other two sons also had the condition.
‘Before we went over he asked for a full family history, as far back as I could remember and as Mary could remember.’
Because EDS is a genetic condition, the professor was also keen to examine the other two boys and discovered that they also had EDS.
‘We went in initially looking for a diagnosis for one but we came out with three; we never suspected that the other two would have it so it was a big shock,’ said Ian.
‘It was good in one way because we got a diagnosis and we knew where were would have to go from there but we’re six years diagnosed now and we’re no further on from where we were.
‘At the moment Kallum is living in the sitting room and has been for the past year because of the operations he has undergone to stabilise his kneecaps. He actually had that done in Ireland and the doctor here has been brilliant to him. The frustrating thing is that even though he has had it done he may more than likely need it done again before he leaves his care in Temple street. A sudden growth spurt or a slight jar of the knee could put him back to square one.’
He said Kallum’s underlying problems mean that he has deteriorated over the past six years, despite his diagnosis and treatment.
‘He’s very restricted by it, it has taken it’s toll. He hasn’t been in school for the past 18 months, he’s being home tutored.’
Kallum has recently been fitted for an electric wheelchair, which has been approved by the HSE, and the family are hopeful he will be able to go to secondary school in September. They have also installed a hospital bed in the sitting room and a ramp to make the house wheelchair accessible which they have paid for themselves.
Keane (15), meanwhile, has the added diagnosis of autism, which can often mean he finds treatment distressing.
‘Keane has very similar traits to Kallum but they are different kids. He has problems with his knees but because he is autistic we are trying to prevent the surgery on his knees due to the fact that it would be such an ordeal for him,’ said Ian. ‘ He’d be in a staight leg plaster for four to five weeks and the rehab aspect of it would be very difficult. They are trying to do an intesnse physio on him but no guarantee it will work.’
The burden of caring for the three boys has taken its toll on the couple and on Mary in particular who cares for them at home while Ian works nights at the airport. ‘We have no help. It is very difficult. I’ve actualy had to come home from work on a few occasions, most recently to put Brandon’s shoulder back in after it dislocated. There needs change by the second, nevermind by the minute. Every spare minute we have is taken up with treatment.’
‘I don’t know how we stay positive. Mary is the one who does the majority of everything. I work nights. Mary sleeps on the couch and then on weekends we do role reversals.’
On top of the 24 hour care the boys need is the added burden of paying for their ongoing treatment.
‘People have been fantastic and we have had so much help with people fundraising for us and holding events to help out with the costs,’ said Ian. While the fundraising has been an enormous help, the bills for the ongoing treatment needed by the boys continues to mount and Ian admits he has been forced to take out personal loans to cover the costs.
‘ The support we’ve had is fantastic, people have been brilliant and we can’t thank them enough. We’re very appreciative,’ said Ian. ‘Hopefully the time will come when we’ll be able to say we don’t need the fundraising help anymore but unfortunately we’re not at that stage and won’t be for a long time yet.’
Because of the familie’s needs and Kallum’s increasing mobility problems, the family are hoping to be able to build a downstairs extension in the near future to give them some much needed extra space.
The next fundraiser for the boys is a golf classic in Hollywood Lakes, Ballyboughal where Ian is originally from.
To donate to the Barrett boys go to www.idonate.ie/BarrettBoysEDS For more information on the boys and there condition see their Facebook Page Barrett Boys EDS.