‘Nothing is ever as bleak as the weeks after the diagnosis but then you pull yourself together’

But after about eight months, she began to miss developmental delays, did not learn to crawl and started crying all the time.

“She could not move at all and had no interest in grabbing anything. Then when she was 14 months, she showed no interest in crawling,” said mum Lynsey.

“When she was around 16 months, we started to look for help as she turned from being a very happy baby to being completely sad, crying non-stop. You can’t imagine that a baby could cry for 12 hours straight for four months but at this stage, we were thinking, ‘What is going on?’”

After consulting with a paediatrician and then a neurologist at Temple Street, blood tests when she was two-years-old confirmed Daisy had Rett syndrome as a result of a rare gene mutation.

A severe neurological developmental delay that mainly presents itself in girls, it came as a “real shock” to her parents as they tried to come to terms with her condition. Rett syndrome affects 1 in 12,000 to 15,000 babies.

Daisy is non-verbal and unable to sit unaided but can take a few steps using the aid of a walker.

“It is an horrific syndrome but now six months later, it doesn’t seem like that. She's joyful and offers a lot and enjoys her life. Nothing is ever as bleak as those first two weeks after the diagnosis when you feel like you want to cry every single minute of the day and you’re never going to be happy again. Then you pull yourself together,” said Lynsey.

Lynsey contacted the Jack and Jill Children’s Foundation for help and met liaison nurse manager Anne McLoughlin. She set up a care plan for the family and they now receive 20 nursing hours from the charity every month, which has been a god-send for the Scallons.

“It means I can take some time for myself. Sometimes I go for a coffee and people-watch or go to a Pilates class. It also allows Paul and I to spend time with our two older girls and give them our full attention. It's great to know that Daisy is in safe hands during that time,” she said.

Despite her challenges, Daisy has been thriving and is a “really happy girl”. She loves Peppa Pig, the feel of a trampoline, water features and her two older sisters Sophie (7) and Abigail (5).

“She just melts our hearts,” said Lynsey. “To see her now a year later, she’s like a different child. We know what she has now so we know how to help her. She can’t walk or talk or feed herself but in terms of her personality, she really enjoys her life now.”

Now in its 25th year, the Jack and Jill Children’s Foundation is having its annual fundraiser to continue helping families like the Scallons through its online art auction, Incognito 2022.

With over 3,000 pieces of art going up for sale from 1,200 artists for €65 each, this year’s contributors include Paul Costello, Maser, Helen Steele and Robert Ballagh.

Proceeds will go towards supporting the work of the foundation and the sale will go live on April 21. Members of the public can register beforehand on www.incognito.ie