Having a ball for vital heart charity

BraveheartsNI will host the ball - their first major fund-raising event - on April 11 at The Braid Arts Centre in Ballymena. Those attending will be treated to a champagne reception, dinner & dancing with performances from two members of the Riverdance team.

Clare Caulfield, the Ballymena woman who is spearheading the BraveheartsNI campaign, explained why the focus will be on teenagers and young adults affected by the disease.

“The need for support within this age group really became apparent when my 14 year old daughter, Shealyn, who was born with CHD (Congenital Heart Disease) was due to go into hospital to have her medication changed.

“Throughout her life I have been a fund raiser for HeartbeatNI which supports the children’s heart unit in the Royal Victoria Hospital for sick children and their families but it wasn’t until June 2013 that we realised her link with the children’s unit had virtually ended as there was no provision for patients who had reached the age of 14. In simple terms, she was too old for the children’s unit but too young for the adult ward!”

“Everywhere else in the UK, all the children’s hospitals have provision for teenagers such as chill-out rooms and bright colourful sleeping areas. There is no such provision in Northern Ireland and this meant that Shealyn had to wait until a side room in the adult Cardiac ward became free before she could be admitted!”

That situation became even more frustrating when it was discovered that Shealyn was in danger of heart failure once again.

As a result, she had to stay in the RVH Cardiac Unit for almost two weeks before she could make the journey to Birmingham for her third major heart surgery.

Claire explains: “While she was in the Royal Victoria, I had to stay with Shealyn at all times due to child protection policies.

“She was stuck in a white clinical side room and I slept on a fold back chair. Whilst the room was spotless and the staff excellent it was a far cry from what we were used to coming from the Children’s unit and a huge culture shock for Shealyn. These teenagers feel ‘different’ and secluded in their daily lives and this highlighted how alone they were.

“The Liaison Nurse told me of a young teenager who was admitted for a couple of months from a carehome and he was so traumatised he didn’t speak for four days. He had no one to visit him, no toothbrush or money for the shop. The LN bought his toiletries etc out of her own money. He had no way of communicating with his friends as he didn’t have a mobile.”

This vision played on Claire’s mind and was to be the spark for the BraveheartsNI initiative.

“While Shealyn was hooked up to all the machines she remained as safe and as happy as she could be because she had company and lots of social media tools to occupy her time. I couldn’t help contrast her experience with that of the young boy from the carehome. It highlighted the major gap of what is lacking in Northern Ireland for teenagers and young adults facing heart disease.”

The realisation that more needed to be done to bridge this care chasm led Claire down the path which would eventually lead to the birth of BraveheartsNI.

“While all this was going on, I had applied to Sainsburys in Ballymena to consider HeartbeatNI as their charity of the year and we were fortunate enough to be selected. From our partnership we have given birth to BraveheartsNI which we will launch at the Masquerade Ball in April.

“The staff in Sainsburys Ballymena have been incredibly enthusiastic about this venture and we believe that the sky is the limit with BraveheartsNI. It’s very exciting and obviously desperately needed in Northern Ireland.”

Shealyn had her third open heart surgery in Birmingham last September.

“This involved the transplantation of mechanical valves which required lengthy but thankfully successful surgery - even though the ticking makes her sound like a clock when she is in the same room as you!,” says Claire. “Her recovery is slow and at times hard. Dealing with the medical condition is hard enough so our aim through the work of BraveheartsNI is to ensure that teenagers and young adults in Northern Ireland will have, at the very least, what their counterparts in the rest of the UK get to enjoy in terms of accommodation for them and their families.