Cecelia Ahern opens up on heartbreak after daughter was diagnosed with rare autoimmune condition
Four-year-old Blossom was diagnosed last year with the condition
Best-selling author Cecelia Ahern has opened up about her heartbreak after her four-year-old daughter was diagnosed with a rare autoimmune condition.
The daughter of former Taoiseach Bertie Ahern has revealed her daughter Blossom was diagnosed with Systemic Juvenile Idiopathic Arthritis, a condition also known as Still's Disease, which is a rare autoinflammatory disease affecting different body organs and systems.
Speaking to presenter Doireann Garrihy on The Laughs of your Life podcast, she revealed: "So Blossom is four years old, and she has what we call SJAI. It’s systemic juvenile idiopathic arthritis.
READ MORE: Cecelia Ahern's 'weird' reason for taking RTE Late Late Show host Ryan Tubridy out of her new book
"Juvenile meaning under 16 and if she was over 16, it would still be juvenile because it's different to adult arthritis. Idiopathic, we don’t know where it comes from, and systemic arthritis means it is an autoinflammatory disease that affects your joints, organs and blood.
"She’s four. She was diagnosed last year so we’re in that early horrible stage where you’re trying to still figure things out and understand it, but she is a little hero."
The 43-year-old Dubliner said it was "absolutely no laughing matter" to see a child in pain.
"But there is absolutely nothing funny about a child being in pain, so I think that is absolutely no laughing matter.
"She’s in and out of hospital all the time, she has to do blood tests, scans and various things but she flies around in a scooter, she is all chat to the rheumatic team."
But Cecelia said she had to fight hard to get a diagnosis for her daughter.
"She was diagnosed early last year but there was a good year of me trying to get that diagnosis. It’s hard to get the diagnosis... so then she was not even two, I knew there was something. You could see with how she was walking, her knees and her legs and her hands, not being able to hold a cup, can’t open and close her hands.
"You start getting ‘listen to me’. I started making notes and seeing everyone I needed to see and seeing them again. You have to fight for your child and that’ll be it for a while and hopefully she’ll go into remission and that is a possibility.
"But that is a little part of life that we have to live with."
She said that although she knows she didn’t want to talk about her daughter’s private life, she feels "hungry for information".
"It’s a lot for a small child, it’s a lot for me. You know if you have a child that’s sick, it’s like a full-time job. With medications, I have to inject her every week at home.
"I know this is her private life and I shouldn’t talk about it but I also think that particularly in the early stages or even now I was so hungry for information – not from doctors, because they can give you all that information but from parents – I want to know what life is going to be like, what’s facing us and all that kind of thing.
"She’s amazing, she’s got so much energy, she flies around in the scooter but then there are days when she is not."
Cecelia also opened up about being the daughter of former Taoiseach Bertie Ahern, admitting people being silent around her made her feel like people were laughing at her.
Asked by Doireann about the first time she felt laughed at, she replied: "It’s a hard one because there are so many. I would say I think growing up with a politician dad would mean that I definitely felt – think of a movie where people are laughed at and everyone is standing around and pointing at them – that nightmare.
"I haven’t had that but for me I hear the laughter in people’s silence if that makes sense.
"You feel the judgey. I think people are sometimes too polite to go ‘hahaha’ in your face but I feel like I’m being laughed at.
"So basically always," she said laughing. "Now you get people saying lovely things.. the most amazing things you hear. There’s always a lovely connection with people you don’t even know."
She gave an example of the day after Budget Day being particularly hard to face her peers in school.
"But say from a young age, if we were in like Budget Day and we’re on the front of the newspaper. It was always a tough day to go into school the next day and I would just feel the eyes...
"And then even I suppose, just walking around with my dad and if I was ever following behind him, I would hear the comments. Because they would just be looking at him and not thinking that people behind him are with him.
"It’s the everyday things that people say. Not mean... just the honest comments.
"From as early as I remember. I remember answering the phone in the house to journalists and being told to say, 'he’s not here yet and to call the office.’ I was always just so aware.
"I just remember people looking all the time. And it’s fine. It was nothing mean or bad, it was just being aware of eyes on you or people are watching," she added.
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