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Family of girl (5) born with rare brain abnormality backing charity fundraiser

Sarah was born with an extremely rare brain abnormality called ZTTK Syndrome. It means she has a developmental delay, is fed orally, is non-verbal and needs round-the-clock care.

Sarah with her mum Cecelia, dad Peter and brother James

Esther McCarthy

Little Sarah Sage has lots to smile about - the bubbly little girl has multiple special needs but giggles her way through the day and meets her own milestones to the delight of her family.

Now Sarah (5) and her family are backing a fundraising campaign in support of a charity that has transformed their lives.

Incognito - Ireland's biggest online art sale which took place on Thursday - was even bigger than ever this year, with stars like Lyra, Christy Dignam and Andrea Corr all taking part. Funds raised will be spent on specialist home nursing care and respite support for over 400 children with highly complex medical and life-limiting conditions in communities across the country.

The Sage family from Dundalk in Co Louth - including mum Cecilia, dad Peter and Sarah's big brother James (12) - have witnessed first hand how the supports can change lives.

Little Sarah Sage

Sarah was born with an extremely rare brain abnormality called ZTTK Syndrome. It means she has a developmental delay, is fed orally, is non-verbal and needs round-the-clock care.

For the family, who had only recently learned that Peter's beloved late sister Michelle had been diagnosed with cancer, the early days were a struggle. The support from Jack and Jill was invaluable.

"Sarah wasn't feeding, she wasn't sleeping," recalled Peter. "It was very, very stressful. There was a lot going on. My sister was diagnosed with cancer before that. So we were up and down to doctors for treatment with that.

"Jack and Jill reached out. Anne, as we call her, the queen, she came into the sitting room and she sat down. We sat down over a cup of tea, it was just it was like a cloud had been lifted. 'This is going to be all right. We're here for you. What do you need?' From the initial conversation that day we had a nurse arranged within a couple of weeks. 'This is the help we're going to give you. We're going to give you a nurse'.

Sarah at school in the Redeemer N.S Cairde unit

Sarah's Jack and Jill nurse Sharon helps the family 20 hours per month.

"Sharon is our local nurse and Jack and Jill has been part of our lives for over four and a half years now," said Peter.

"Having specialist nursing support from Sharon allows us to spend time away from the home with our older son James, and we can plan nights out or special occasions - it's a weight lifted to know that Sarah is well looked after at home."

Despite her profound special needs, Sarah continues to reach her own milestones to the joy of her family.

"Sarah is just amazing," said Peter. "Every day there's a different wow with her. She has come from not being able to support herself but she's bum shuffling now. She's interacting, she's non-verbal, but she's screaming at the telly because her programme is on. She loves Charlie and the Numbers on Baby TV.

"Sarah is a very sociable little girl. She loves to have a little laugh or a giggle. We aren't always sure what she is laughing at, but it's amazing to see," smiled her dad.

"We invested in a hot pool at home, and it has really helped her improve her muscle tone. She loves the sensation of the water and it's the little wins like that that make our week."

Her loving family is determined to support Sarah in whatever ways they can. "We just hope Sarah has a good life," said Peter. "We will do whatever we have to do for her. We don't know what the future holds. We only know today."

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