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New campaign Parents reveal how Temple Street Hospital's 'beautiful' play therapies have helped their daughter

'We fight every day to give Alexis every chance possible to reach her potential'

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Alexis O’Mahony at playtime.

Alexis O’Mahony at playtime.

Alexis O’Mahony at playtime.

Five-year-old Alexis O'Mahony has plenty to smile about - she's backing a new initiative that will spread fun and colour among ill children throughout Ireland.

Alexis is one of hundreds of Irish children taking part in the Rocks play campaign supported by Children's Health Foundation Temple Street.

The hospital's play specialists have launched Rocks as a new kindness initiative with colourful paints and positive messages to lift children's spirits. Every single patient at the hospital has been given their own rock painting kit.

For Alexis and her family, it's a sign of the importance of play for the her during her sometimes challenging hospital visits.

"With kids like Alexis it's all about sensory stuff and stimulation," said dad Steve. "Being involved and actually not just sitting in your wheelchair all day doing nothing, actually being stimulated."

Mum Teresa agrees, adding: "To be honest, this is the most beautiful thing you can do with a child, it's amazing."

Staff at Temple Street have long championed play for children and the hospital has a dedicated department. Play Specialists prepare children for medical and surgical procedures while in hospital, distract them during procedures and follow up with post-procedural play.

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Temple Street is a home from home for Alexis.

Temple Street is a home from home for Alexis.

Temple Street is a home from home for Alexis.

 

Alexis is one of many children who has benefited from these services as well as the use of a multi-sensory room and an interactive sensory garden.

The Killarney girl was born with PDH, a very rare and serious condition that affects her metabolism. It's characterised by the build-up of lactic acid in the body which can be potentially life-threatening. PDH caused Alexis's brain injury before birth, which in turn has led to various other issues.

But the family say that she brings joy into their lives every day. "I will tell you the biggest thing ever last weekend," smiled Teresa. "I took her from the wheelchair and she gave me a big hug, it was so emotional. Out of the blue she basically put her hands around me and hugged me. For me, this was the biggest thing ever."

The couple have always embraced their little girl as they work to help her reach her own potential. "We didn't force ourselves to be that way. It kind of naturally happened early on in her first year," said Steve.

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Teresa and Steve with Alexis enjoy a day out.

Teresa and Steve with Alexis enjoy a day out.

Teresa and Steve with Alexis enjoy a day out.

 

"We accept everything with Alexis. Her energy is so positive. What we do is we just fight every day to give her every opportunity possible to reach her potential, whatever that potential may be.

"I always say one person's Everest, and the next person's Everest are two completely different things. She had this thing going on with the last year where if you put her on her belly on the ground, she can use her hands and legs to push herself back over a metre across the kitchen floor. And you can see how happy she is that she can do that.

"Everything is what it is. If you're always thinking about 'when will she do this?' you're never going to be right now in this moment, and you're never going to enjoy life as it is right now with her because she's a bundle of joy. We're completely blessed to have her."

The couple had never heard of the rare condition and only knew from their seven-month scan that Alexis had a brain abnormality.

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Little Alexis brings so much joy.

Little Alexis brings so much joy.

Little Alexis brings so much joy.

 

Numerous tests were carried out to rule out other conditions before and after her arrival and the family was referred to Temple Street. Further investigations found that PDH had led to Alexis's brain abnormality, which in turn was the cause of her other issues.

"Tests showed what the primary condition was," said Steve. "Everything else that comes from that then, whether it's the cerebral palsy, epilepsy, the dislocated hips, all that is to do with the brain abnormality really."

Added Teresa: "As parents at the start you're like, what is PDH? And then you kind of have to make decisions, exceptions. You have to be good enough for Alexis, for her to feel that you're strong enough that she's not feeling the stress and worry from you."

Still, they both remember moments of shock during the initial diagnoses. For Teresa, a sense of trepidation during that scan left her in tears.

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Dad Steve and mum Teresa with little Alexis.

Dad Steve and mum Teresa with little Alexis.

Dad Steve and mum Teresa with little Alexis.

 

"The scan was longer than it was meant to be and that clicked with me as something is wrong. When they said: 'Can we have a chat?' I knew it, and I started to cry."

Steve remembers the first time he looked up the condition online and felt overwhelmed. "The internet gives you one viewpoint, which is the worst of the worst. Ever since then, I was fine."

They are full of praise for the hospital's care teams who have supported them and their daughter, calling it a home from home when they attend there for her appointments.

"Basically Alexis has grown up with them in there," said Steve. "We can trust them. We know we have her circle whether it's in ophthalmology, or neurology, or dietitians, her metabolic professor or the nursing staff, or orthopaedic, psychology - it's multi disciplinary there. It makes it all that bit better and comfortable when you know the people. They're like your family and that makes everything a lot better."

  • For more information about Children's Health Foundation Temple Street and how you can support the work they do, log on to cuh.ie

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