“The diagnosis was one of the hardest days of my life. We were totally and utterly in love with our little boy and felt absolutely heartbroken to learn that his quality of life may be poor.”
These are the words of Lucy, on discovering her first baby Darragh was very ill at birth.
When a child is sick, as a parent, you would do anything to make them feel better. You would swap places with them in an instant to shield them from any suffering. If your child was seriously ill, wouldn’t you want them to be cared for at home? Snuggled up in their favourite blanket, cherished teddy bears beside them, and most importantly loving family around them at all times.
Lucy and her family have endured the tragic death of two children, Darragh at 6 months and also her fourth child Ronan, both of whom had a condition called Lissencephaly.
Her experience of caring for her two boys was very different – the first time around she struggled with a lack of support. The second time, she had a rock of support in a Children’s Outreach Nurse.
Lucy said, “From the moment we met her, she was so helpful. She built me up and gave me the confidence to be able to care for my son when I felt ready to fold.
“I have no doubt that Hilary went above and beyond any job description on this planet. She came into our family at a time when she was so badly needed, and we feel extremely lucky to have had her involved in Ronan’s life. I can never repay to her what she has done for us.”
There are over 3,800 children in Ireland with life limiting conditions. These are incurable illnesses that need lot of care. Around 350 of these children die each year. Their little lives cut short long before their time.
Your donation can help make a difference by enabling families to bring their dearly loved children home to make the most of their precious time together. This is where our Care for Children Campaign comes in.
The Irish Hospice Foundation is your national charity working in the area of dying, death and bereavement. With the help of generous supporters like you we established this programme which includes a team of Children’s Outreach Nurses and Ireland’s only Paediatric Consultant with a special interest in Palliative Care. We funded 85% of the start-up cost of this programme and are delighted that the HSE is gradually funding the service.
Right now, a team of Children’s Outreach Nurses are playing an important role in helping families around the country to care for their seriously ill children at home. They are advised and supported by the Paediatric Consultant who specialises in palliative care.
But further developments are needed. With your help, we want to do more. Starting with funding a second Paediatric Consultant in Temple Street Hospital and building a fund so that more families can be reached by Children’s Outreach Nurses.
If you want to support more families like Lucy’s you can donate now by selecting our Easter Appeal here