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“Nothing is as bleak as the weeks after diagnosis, but then you pull yourself together”

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When Daisy Scallon was born in May 2019, nothing seemed wrong. The third girl born to parents Lynsey and Paul from Clondalkin, she initially seemed like a perfectly interactive and healthy baby.

But after about eight months, she started to overlook developmental delays, didn’t learn to crawl, and started crying all the time.

“She couldn’t move at all and had no interest in packing anything. Then, when she was 14 months old, she showed no interest in crawling,” said mother Lynsey.

“When she was around 16 months old we started looking for help as she went from being a very happy baby to being completely sad and non-stop crying. You can’t imagine a baby crying for 12 hours for four months, but at that stage we were like, ‘What’s going on?’”

After consulting a pediatrician and then a neurologist in Temple Street, blood tests at the age of two confirmed Daisy had Rett Syndrome due to a rare gene mutation.

A severe neurodevelopmental delay, which occurs mostly in girls, came as a “real shock” to her parents as they tried to cope with her condition. Rett syndrome affects 1 in 12,000 to 15,000 babies.

Daisy is nonverbal and cannot sit up unaided, but can walk a few steps with the help of a walker.

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

Lynsey contacted the Jack and Jill Children’s Foundation for help and met Head of Liaison Nurse Anne McLoughlin. She set up a care plan for the family and they now receive 20 hours of care each month from the charity, which has been a godsend for the Scallons.

“That way I can take time for myself. Sometimes I go for coffee and people watch or I go to a Pilates class. Also, Paul and I can 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 this time,” she said.

Despite her challenges, Daisy is thriving and is a “really happy girl.” she loves Peppa Pigthe feeling of a trampoline, water features and her two older sisters Sophie (7) and Abigail (5).

“She just melts our hearts,” Lynsey said. “Now, a year later, when you see her, she’s like a different kid. We know what she has now, so we know how to help her. She can’t walk, speak or support herself, but as far as her personality is concerned, she’s really enjoying her life now.”

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

With over 3,000 artworks for sale by 1,200 artists for €65 each, this year’s contributors include Paul Costello, Maser, Helen Steele and Robert Ballagh.

proceeds supports the work of the foundation and the sale starts on April 21st. Citizens can register in advance at www.incognito.ie

https://www.independent.ie/irish-news/health/nothing-is-ever-as-bleak-as-the-weeks-after-the-diagnosis-but-then-you-pull-yourself-together-41500151.html “Nothing is as bleak as the weeks after diagnosis, but then you pull yourself together”

Fry Electronics Team

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