Eoin's Story

"In Hospice we feel more like a normal family than we do outside of Hospice."

Eoin is the middle child in the O’Neill family, with Jay his older brother and Aine his little sister. Eoin has lots of medical needs, he is partially sighted, he has hearing loss, he has heart conditions, he is tube fed and has a tracheostomy - which is an artificial airway.

Most of Eoin’s condition comes from his genetic disorder called Cri du Chat syndrome, it means cry of the cat because many children with this condition have a high pitched cry. But not Eoin - because his artificial airway bypasses his vocal chords, his mum and dad have never even heard his cry. Eoin’s mum, Anne Marie tells us that apparently he cried once in the hospital when his airway was being changed but she was so traumatised at the time she missed it and it remains a heartfelt regret.

Anne Marie remembers when they first brought Eoin home from the hospital as a baby, “it was really intense, we were left with this little baby for 24 hours a day, who needed us for everything but he couldn’t even tell us he needed us - it was terrifying.

When the community nurse first spoke to me about Children’s Hospice and how it could help, I was sceptical and the first time John and I walked through the doors I was sick to my stomach. But it was beautiful and welcoming, and I felt strangely at home. When we walked back out to the car and got in, we sat for a minute, then John said “what do you think?” and I turned to him and said “I love it” and he said, “Yes, me too.”

"Hospice is somewhere we get to have fun together with Eoin as a family. Eoin can be sick up to 20 or 30 times a day but at Horizon House, someone else cleans up the sick and changes Eoin and for those one or two days I get to play with him, have fun and just be a mummy to my six year old boy. The only time we’ve ever been able to take Eoin swimming has been at Hospice, he can’t go to a normal pool, so when we’re all in the pool together, well, its really special and it’s what other families do. In Hospice we feel more like a normal family than we do outside of Hospice."


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