Eoin O’Neill
Nine-year-old Eoin O’Neill from Lisburn is a true Little Star! According to his devoted mum Ann-Marie, Eoin is “a very determined little boy, and despite having a lot of health issues, he is always happy and smiling. He’s a wee joy who lights up any room.”
Eoin is so full of love and energy. Above everything else, he just loves his brother and sister, Jay [12-years old] and Aine [eight]. Eoin doesn’t like to use his hands for much, but as soon as he is close to Jay or Aine he will reach out to touch their faces or play with their hair.
“Eoin was born with Cri-du-chat syndrome, a rare genetic condition. His lifelong complications include hearing and sight loss. Eoin is unable to eat and so is tube fed. He has very small airways and so has had an artificial airway, tracheostomy, since he was a week old. He’s non-verbal, and so even when he cries, he is silent because of his tracheostomy, but he communicates with facial expressions and body language.
“When Hospice was first mentioned, I felt sick to my stomach with nerves, it felt so negative and scary. We almost didn’t go to the meet and greet, as my husband John and I had both decided that it just wasn’t for us. But we felt bad for saying no to the offer of help.
“As soon as we arrived, we felt a positive energy! It shattered so many of those myths and preconceptions about Hospice, that it’s just a place where sick children go to die, that it’s all doom and gloom. It’s actually a wonderful place full of fun and laughter and joy!
“We have now shared dozens of happy family memories at Horizon House, since we started visiting properly as a family, when Eoin was about 6 months. I remember that first visit, Jay was about four years old and enjoying himself so much that he hid his shoes behind the curtains so that we couldn’t go home!
“We were a bit worried about how Eoin’s condition would affect Jay. Is he getting enough of a childhood? And how would he interact with the other children receiving care in Hospice? But we needn’t have worried, because as we were signing in that first time, Jay was soon throwing a ball and playing catch with a young boy in a wheelchair. Jay’s handled it all so well and it’s definitely making him a better, more grounded and empathetic young man. He’s a Little Star too.
“Jay and Aine love playing in the Den, while Eoin loves the swings and the garden, but his favourite is the sensory room – he could live in there all day!
“We couldn’t have coped during Covid without Hospice’s Care At Home. They arranged fun activity packages and regular Zoom calls for the kids. I had also lost two babies during the pandemic and the Hospice care team were a great support for me during that time, including adding two personalised memorial stones to the Garden of Remembrance up at Horizon House.
“The supported short breaks at Horizon House have also allowed us to have priceless experiences as a family all together, and separately with our other two kids. For example, one highlight is going swimming in the pool at Hospice, which is something Eoin really loves – but he simply couldn’t do that in a public pool due to the risk.
“This summer, while Eoin was being cared for in Hospice, we took Jay and Aine for a weekend’s glamping on the North Coast and visited the Giant’s Causeway. It’s something which seems so simple, and other families would take it for granted, but we couldn’t have done that without the support of the Hospice’s respite care.
“Considering how reluctant we were to start with, now we realise just how fortunate we are. We are so proud to be a part of the Hospice family.”
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