How one family's funds drive could help to save many lives
Published 20/08/2016 | 00:00
The plight of two young sick children from Duncormick has led to four nearby villages receiving life-saving equipment.
MJ and Ryan Brophy Cox from Sli Cormick in Duncormick both suffer from a heart defect known as HOCM (Hypertrophic obstructive cardiomyopathy), with two-year-old Ryan being particularly affected.
HOCM is a disease of the myocardium, the muscle of the heart, in which a portion of the muscle is thickened without any obvious cause, causing the heart to stop working effectively. The condition, which can cause cardiac arrest at any time, often leads to sudden death.
Six-year-old MJ only received his diagnosis a couple of months ago while two-year-old Ryan was diagnosed in October 2014, when he was just 13 months old.
In addition to having HOCM, little Ryan was diagnosed with a cyst on his brain only last week and the family face an anxious wait to see if this is a tumour or not. Ryan also has exceptionally poor balance because the cerebellum at the back of his brain isn't growing which is severely affecting his motor control.
The boys' aunt, Melissa Brophy, said Ryan has an appointment for Crumlin hospital on August 22 in relation to the cyst and they are living in hope.
'We are in limbo at the moment but we are just hoping against hope that it won't be a tumour. We won't know more until further tests are carried out then which is a big worry for the entire family.'
Melissa said that in order to do something practical to help her sister and her nephews, she set about organising a charity table quiz some four months ago with the aim of raising enough money to buy two defibrillators, one for the boys and one for use in Duncormick by the community.
'Before the table quiz was even on we had raised €4,000. People were just so amazingly generous. They just wanted to do something to help the boys. To be honest the last couple of months have been so emotional for our entire family. People have been so good.'
Melissa said that after seeing everything the Brophy-Cox family are going through people quickly rowed in to help out, with the Bannow Rathangan Pool league raising just under €7,000.
'We quickly realised that we had ample funds so we decided to use the money to buy six defibrillators rather than two. Now four villages are going to have a community defibrillator in situ, Cleariestown, Baldwinstown, Wellingtonbridge and Duncormick. In addition, both MJ and Ryan will each have their own defibrillator in the house.
'We've raised just under €12,000. When we started we hoped to raise the money for the two defibrillators and if there was anything extra get some soft mats for the boys, but when we realised how much we raised we decided it would be better to fund more life-saving defibs. When they are installed in the next couple of weeks there will be six defibrillators within a five mile radius which will save countless lives.'
Melissa, a member of the Rathangan Defibrillator team, highlighted how vital the devices are in saving lives. 'A fortnight ago I was on call and received a call about the need for the defib. That defibrillator was in that house within three minutes. In the end we didn't need to use it because there wasn't a cardiac arrest but the threat was there. The first five minutes in cardiac arrest are the most vital and that's why they are so necessary in areas, particularly more rural areas.'
Melissa said that six-year-old MJ isn't showing any symptoms of HOCM at the moment and is a bright and bubbly youngster who is getting ready to start first class at Rathangan National School. However the threat of him going into cardiac arrest at any moment is always there,
Ryan, however, needs to travel to Dublin every three to four weeks and is often there for days at a time. 'Ryan just has no balance and has epilepsy as well. He is barely able to move in his high chair. The whole thing just wipes him out.'
Tragically, heart surgery isn't an option for the tot and the only way to treat his HOCM is by way of a heart transplant.
He was diagnosed after a heart murmur was detected and investigated shortly after his first birthday. Subsequent tests show that MJ also has the defect.
A recent charity pony trek to Cullenstown Beach, organised by Martina Doran in the Railway Yard Gallops, raised €3,266 for the Brophy Cox siblings. Martina, who organises an annual charity trek, said that she felt she had to do something to help the family.
'We had a great day and there were more than 80 riders on horseback as well as people in cars, on bikes and in pony and traps. The community really pulled together and I had great help from my parents, Annette and Murt and my husband Shane O'Reilly on the day. In addition to the trek, we had an auction and raffle with many local businesses contributing to these. Sid Scallan provided music and sound and the day was a great success.'
Melissa said that the money raised from the pony trek will be used to clear and then concrete the back garden of the Brophy Cox home and buy some soft mats and other equipment so that the boys, particularly Ryan, can spend some time outdoors.
Despite their condition Melissa said that the boys never complain. 'They are the happiest boys you could come across. They never moan or complain. Ryan needs to give blood every so often and because of the HOCM he could spend four days or so in Crumlin Hospital so that they can get enough blood.
'He had to have 60 little pads on his head while he was having a scan and when they were taking those pads off him he never uttered a word. When you look at them you would just do anything for them and I think that they have that effect on everyone.
'People who don't even know us have made donations. My father Richard has a bouncy castle business and on the weekend of the table quiz he had ten bouncy castles hired out. When he went to collect them eight out of the ten houses gave him a donation for the fund.
'People have been just unbelievable. They don't realise how much it means to our entire family. Duncormick is such a little community and to see such spirit is overwhelming. Every time we think about it we are just overcome with emotion. We will never be able to thank people enough for what they have done for the boys.'
Although Ryan is unaware of his condition, MJ's curiosity was raised when he saw their faces on the poster advertising the table quiz. 'He's superhero mad', said Melissa 'so when he asked we sat him down and told him that he has a superhero heart. We said we were going to get a machine which might help to slow it down if it ever became too strong and he was satisfied by that explanation.'
The four community defibrillators were delivered last Friday and are expected to be operational within weeks in Wellingtonbridge, Baldwinstown, Duncormick and Cleariestown.
In Wellingtonbridge the device will be sited on the wall of Tir na nOg; in Baldwinstown on Odlum's Costcutters; in Duncormick on Day2Day; and in Cleariestown at the Community Hall. In addition Rathangan GAA club have bought an external box for their own defib and will now place it on the wall of the clubhouse so that it is accessible for anyone using the pitch at any time.