‘I don’t know where I’d be without CF Ireland’

By Mary Dennehy

A TALLAGHT teen and her mam have sent a massive thumbs up to Cystic Fibrosis Ireland for the vital information, support and reassurance they provided during lockdown, and ahead of the charity’s annual day of fundraising this Friday, April 9.

Living on the Belgard Road, Saoirse Brophy (13) was diagnosed with Cystic Fibrosis (CF) when she was two years old.

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Saoirse Brophy sending a thumbs up to CF Ireland

An inherited chronic disease, Cystic Fibrosis affects the lungs and digestive systems of almost 1,400 children and adults in Ireland, with the condition causing the body to produce a thick and sticky mucus which clogs the lungs and leads to life-threatening lung infections and serious digestion problems.

Ireland has the highest rate of CF per capita in the world, with around 34 new cases diagnosed each year.

A first-year student in Kingswood Community College, Saoirse is no stranger to The Echo – and has over the years shared her story to raise awareness and help others in the CF community.

The 13-year-old first graced the pages of her local paper back in 2013 when she was chosen to participate in a Cystic Fibrosis Ireland (CF Ireland) campaign, which positively promoted those living with the disease in Ireland.

In 2016, Saoirse and her mam Siobhan were back in The Echo when they were part of a nationwide campaign that called on the Government to approve a CF drug called Orkambi – with Saoirse sending a message to then Minister for Health, Simon Harris.

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Saoirse Brophy at her hospital bed this week

This week, Saoirse and mam Siobhan have spoken with The Echo about their time cocooning, and the vital support they received from CF Ireland – highlighting the very real difference the charity made for families over the past year.

“We were in complete lockdown from March until November 2020”, mam Siobhan told The Echo.

“I was worried and anxious; it was all so uncertain in the early days…we weren’t even going out for walks.

“However, CF Ireland provided so much comfort and reassurance, they helped us to see that we were not alone.

“You can feel quite isolated cocooning, but CF Ireland reassured us that we were not the only ones going through this, not the only ones feeling this way.”

She added: “It was such a scary time, especially in the beginning.

“However, CF Ireland was great at providing information specific to CF patients at a time when the world was learning.

“The more I learned from CF Ireland, the more I could relax.

“They talked me through the statistics and guidelines [relating to CF patients] and put my mind at ease, which was so important for my mental health.”

Saoirse cocooned for the first nine months of the pandemic as her lung function was very low, starting her first year in secondary school remotely.

However, in November 2020 she started a new drug that increased the teenager’s lung capacity by 11 per cent, and which saw her attend school for six weeks before Christmas.

Saoirse, who is currently in Tallaght University Hospital for two-weeks of routine IV  treatment, is hoping to get back to school later this month.

“We still have to stay safe”, Siobhan said.

“However, CF patients know how to look after themselves, they’ve always had to keep their hands clean, wear masks.

“Cocooning was difficult for Saoirse, but she found ways to get through it.

“She donated all of her big teddies to a younger girl who was also cocooning, things like that.

“When you have something like CF, you don’t sweat the small things…and Saoirse would describe something like a global pandemic, as the ‘small stuff’.

“It’s what makes people with CF so special, they don’t even realise how much harder their lives are.”

This Friday, April 9, is 65 Roses Day, CF Ireland’s largest fundraising event of the year, with the charity hoping to raise €300,000 for its much-needed services.

“The advice, support and comfort at the end of the phone is so important for all families”, Siobhan said.

“CF Ireland is always in our corner.

“I don’t know where I’d be without them, and I’d encourage people to support 65 Roses Day this Friday.”

Saoirse and Siobhan also wished to thank the “amazing” CF team at Tallaght University Hospital and Kingswood Community College for supporting Saoirse to go to school.

To learn more about CF Ireland visit www.cfireland.ie or donate at www.65RosesDay.ie.

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