herald

Sunday 19 August 2018

How little Ava-Li inspired her mum to pen CF book

THE mum of a young cystic fibrosis sufferer has published a book to help parents deal with a diagnosis of the illness.

When Ava-Li Blount (4) from Louth was diagnosed with CF at 14 months old in 2008, her mum Louise Byrne's whole world came crashing down.

She told the Herald: "It's a nightmare because you do see all of the overwhelming negative information and you can't help but sink into a despair.

"When you get the diagnosis, it feels almost like a bereavement. The life that you thought was going to be has changed in your head.

"We were overwhelmed with words like chronic illness and shortened life expectancy."

But Louise decided to take control and manage her daughter's illness, and Ava-Li has enjoyed optimum health with very little need for antibiotics.

Louise concentrates on keeping her household positive, and she refuses to use words like "disease" around her daughter.

"I was chatting to a guy this week who is 41 and had a double lung transplant in his 30s -- there are loads of CF adults out there that are well and able to manage it," she said.

Louise wrote and self-published the book Can You See What I See? in an effort to comfort and inspire parents who have just received the diagnosis of CF for their child.

"Yes, we have the highest rate of CF in the world and the highest carrier rate. But if your child is diagnosed it's very difficult. And I wanted to produce something positive, fun and more balanced," she said.

"There's a little super hero and the book is all about what she does in a day, and it's all about how you don't need to feel different or left out. The little super hero is listing out all of the things she does like "watch TV," "go to the hospital," and "go to the park."

"I wanted to normalise CF because lots of kids go to hospital to get x-rays. And when you get the diagnosis, you're in shock and you go from having a normal life in pre-diagnosis to post diagnosis when you hear words like "double lung transplant" and "failure to thrive"."

She added: "There's a top tip on each page for parents. It's particularly good for families who have just been diagnosed."

Can You See What I see? is available through www.choicepublishing.ie, or from Louise directly at louisebyrnebooks@gmail.com.

hnews@herald.ie

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