I have three boys, James, Billy and Frankie. Frankie is the youngest and was our rainbow baby after losing a little girl. At our 20 week scan we were told the devastating news that he had numerous congenital heart defects. Many specialist appointments followed in the Royal maternity hospital. The general consensus was that his prognosis was poor and so there was no plan to treat him when he was born.

On March 28th 2018, Frankie was born at a healthy 7 lb 8 oz fighting.  After two days Professor Casey told me that because he was holding his own, they too would fight for him. At 4 days old on Easter Sunday we were transfered by air ambulance to Birmingham Childrens Hospital. It is here that Frankie had the first of four life saving heart operations. 

Frankies surgeries and treatment are palliative, they buy him precious time to spend with family and to enjoy the life he loves. He is the happiest most sociable boy you could meet. 

There are no more treatment options for Frankie now as he approaches his third birthday, he is now officially listed for a heart transplant.  Frankie has since been listed urgently and is awaiting his gift of life in hospital.

The Northern Ireland Childrens Hospice has been involved with our family for just over a year now. They provide much needed respite, as you can imagine his care needs are many and take a toll on the whole family. His brothers are so compassionate and have learnt alot but watching their brother grow sicker and less able to do the things he enjoys is difficult for them. 

Frankie now has a little brother Arthur who has been a real joy and the house. 

Frankie loves spending time at the hospice, he calls it 'going on his holidays'. They have also been there for the difficult conversations about what should happen if he doesn't get the opportunity of a heart transplant or never receives a donor. They have helped us make the absolute most of our time together. They are largely charity funded and so I want to give back if I can.

The only service of its kind in NI, Children's Hospice cares for over 370 babies, children and young people each year at our dedicated Children's in-patient unit - Horizon House and in our local communities through our Specialist Community Nursing Team. 

Our work also extends to families, supporting them from the point of diagnosis right through to the grieving period after bereavement.

 We receive a small amount of government funding, so we rely on the generosity of our local community to help us to continue to deliver our vital service.