‘People don’t know how much we love each other, because all they see are bruises’

His children, seven-year-old Elayna and her four-year-old brother Alex, are the focus of a fundraising drive for the Barretstown Children’s Fund.

The children were born with Glanzmann’s disease, one of the rarest conditions in the world. The inherited blood clotting disorder results in abnormal and excessive bleeding and also causes constant bruising.

While the medical challenges are endless (a seemingly harmless nosebleed can lead to up to 60% blood loss in the body), the social stigma attached to bruising is very difficult for Cian and his wife Nikki.

Cian explained that the constant bruising the children have as a result of their rare condition often raises suspicions from strangers and questions from other parents.

Cian says the holiday in Barretstown provided the family with a prejudice-free environment and gave them a break from the gruelling schedule of doctor appointments.

His accolades come as the charity, Ireland’s largest provider of therapeutic programmes for children with serious illnesses, celebrates its 30th anniversary.

“We had never heard of Barretstown until it was recommended to us by one of our advisors,” Cian told the Irish examiner:

It’s a brilliant, magical place where you feel at ease. Everyone is open and there is no judgement.

He explained how life in Barretstown is so different from their everyday existence.

“Judgment is something we struggle with every day. That doesn’t happen in Barretstown.

“Sometimes I feel like Nikki has more to do with it than I do. She gets a lot of comments. Elayna and Alex are really normal and strong kids. The only thing that sets them apart is that they walk around with bad bruises every day.

“We are currently on holiday and have been asked several times whether Alex falls often.

“Bruises form from such a light touch that it is difficult to say how they occur.

“What I find very strange is that people often judge us, even when they see us enjoying ourselves with our children. People don’t know how much we love each other, because all they see are bruises.

“They assume we’re neglectful and that’s probably the hardest part. The reality is we’re a very close family who idolize each other.

The fact that we love each other so much makes it even harder to judge.

“It taught us not to stare or judge because you never know what someone is going through.

Situated at the foot of the Wicklow Mountains, Barretstown offers holidays for children with the most complex needs.

“Alex’s case in particular is very serious, where a nosebleed can last for days and he can lose 50% to 60% of his blood,” Cian explains.

“He has had multiple red blood cell transfusions. He has also had platelet transfusions and a portacath has been placed in his chest, which gives us central access to his veins to give him emergency medication.

“He’s on Novo Seven daily. It’s not really a defined treatment, but because the bleeding is so severe and frequent, he gets one dose a day. When you’re traveling, you have to take a lot of medications and have a plan for first aid treatment.

“We have to travel with letters describing what is needed if we have an accident and hospital doctors need to know what treatment is needed within a certain time frame. There is so much that goes into planning a holiday for us but Barretstown helped us forget about that for a while.”

Cian explained what sets the organisation apart: “Elayna in particular has fallen in love with Barretstown. Over the years we have taken her to Disneyland and on a cruise, but for her there is no place that compares to Barretstown.

“This is a huge testament to charity. If Elayna is feeling this way now, I’m sure it will have the same impact on so many other children. You could spend all the money in the world creating memories for your children.

“But it’s the people who spend time with them playing games and doing crafts that they really cherish and remember. That’s all kids want. It speaks volumes to me that you can go out and buy them everything in the world, when all they really want is people to spend time with them.

“Alex is still at the age where he can’t make any distinctions. However, we told Elayna that there would be other families in similar situations to her.

“The kids may not have the same disorder, but they also have illnesses that are difficult. She doesn’t think about that. It’s the atmosphere that’s created up there that she loves. There’s no real phone reception up there, so it forces you to remove all distractions and spend quality time together as a family. It brings tears to your eyes when you think about it. That feeling of pure happiness and joy that you get when you arrive is hard to explain.”

He also praised the work of the volunteers in Barretstown.

Sickness and suffering are cast aside. You smile from the moment you arrive until the moment you leave.

“It has that effect on you because of the people who are there. It’s not the location, it’s the people that make Barretstown special.

“These are working mothers and grandparents who take time out of their busy schedules to help children. And then there are the volunteers who were previously sick and are now coming back to volunteer.”

Creating experiences for the children outside of the clinical environment is incredibly important to the couple.

“Alex spends five or six weeks at a time in hospital fighting infections. He’s probably had three 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.”

• Visit Barretstown.org for more information or to make a donation to the cause.