People don’t know how much we love each other because all they see is bruises
POSTED
July 29, 2024
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Cian O’Sullivan tells Sarah Horgan about the blood disorder affecting his children, the judgment of strangers when they see the resultant bruises, and the respite the family enjoys at Barretstown.
A Cork father has opened up about how quick society is to judge as his children struggle to cope with an extremely rare blood disorder that causes continuous bruising.
“Judgement is something we struggle with on a daily basis,” explains Cian O’Sullivan, as he paid tribute to the charity which has helped the family to cope and provides a welcome respite.
His children, seven-year-old Elayna, and her four-year-old brother Alex, are the centre of a fundraising campaign for the children’s charity Barretstown.
The children were born with Glanzmann thrombasthenia. One of the rarest conditions in the world, the hereditary blood clotting disorder results in abnormal and excessive bleeding and also causes constant bruising.
While the medical challenges are endless — a seemingly innocuous nosebleed can result in up to 60% of blood loss in the body — the social stigma attached to the bruising is very difficult for Cian and his wife Nikki.
Cian explained that the constant bruising which the children experience due to their rare condition often arouses suspicion in strangers and questions from other parents.
Cian says holidaying in Barretstown allowed the family to experience an environment free of judgement as well as a break from the gruelling schedule of medical appointments.
His praise comes as the charity — Ireland’s largest provider of therapeutic programmes for children impacted by serious illnesses — celebrates its 30th birthday.
“We hadn’t heard about Barretstown until it was suggested to us by one of our consultants,” Cian told the :
He explained how life in Barretstown differs so much from their day-to-day existence.
“Judgement is something we struggle with on a daily basis. That doesn’t happen in Barretstown.
“Sometimes I feel like Nikki has to deal with it even more than I do. She gets a lot of comments. Elayna and Alex are really normal and strong kids. The only thing that differentiates them is having to walk around every day with severe bruising.
“We are on holidays at the moment and have been asked numerous times if Alex has a lot of falls.
“Bruises come on with such a light touch that it’s hard to tell how they came about.
“What I find very strange is that people are often judging us, even when they can see us out having fun with our kids. People don’t know how much we love each other because all they see is bruises.
“They assume that we are neglectful and that’s probably the hardest part. The reality is we are a very close family who idolise one other.
“It has taught us not to stare or be judgemental because you never know what people are going through.
Situated in the foothills of the Wicklow mountains, Barretstown provides holidays for children with the most complex of needs.
“Alex’s case in particular is very severe so a nosebleed could continue for days on end and result in the loss of 50% to 60% of blood in his body,” Cian explained.
“He has had to have multiple red blood cell transfusions. He has also undergone platelet transfusions and has a portacath fitted in his chest that leaves us have central access to his veins to give him emergency administration of drugs.
“He’s on Novo Seven daily. It’s not really a defined treatment but because the bleeds are so severe and frequent he is on one dose a day. When you’re travelling you have to bring with you a lot of medicine and have a plan for first aid treatment.
“We have to travel with letters to detail what is needed if we were in an accident and hospital doctors need to know which treatment is required within a certain timeframe. There is so much that goes into planning a holiday for us but Barretstown helped us forget about all that for a while.”
Cian spoke about what sets the organisation apart: “Elayna in particular has fallen in love with Barretstown. Over the years we have brought her to Disneyland and on a cruise but as far as she’s concerned there is nowhere that compares to Barretstown.
“This is a huge testament to the charity. If Elayna is feeling this way now I’m pretty sure it will have the same impact for so many other children. You could spend all the money in the world trying to create memories for your children.
“However, it’s the people who spend time with them playing games and doing arts and crafts who they really cherish and remember. That’s all children want. It speaks volumes to me that you could go out and buy them everything in the world when all they really want is to have people spend time with them.
“Alex is still at the age where he doesn’t differentiate. However, we told Elayna about how there would be other families in similar situations to her.
“The children might not have the same disorder but they have illnesses that are also difficult. She doesn’t think about that though. It’s the atmosphere that’s created up there that she loves. There is no real phone reception there so it forces you to get rid of any distractions and spend quality time together as a family. You well up thinking about it. That feeling you get of pure happiness and joy when you arrive is difficult to explain.”
He also praised the work of Barretstown volunteers.
“It has that effect on you because of the people who are there. It’s not the location but the people that make Barretstown special.
“These are working mums and grandparents taking time out of their busy schedules to help children. Then there are the volunteers who suffered illness before who return to volunteer.”
Creating experiences for their children outside of a clinical environment is extremely important to the couple.
“Alex spends five or six weeks at a time in hospital fighting infections. He probably got three of them in the last eight months. The kids have spent a lot of time in Crumlin and Cork University Hospital. That’s why creating memories like Barretstown is so important.”