herald

Wednesday 13 December 2017

Lesley Anne Donnelly recalls her own family's fight against Cystic Fibrosis

I lost two beautiful sisters to Cystic Fibrosis and it breaks my heart to recall the horrors they had to endure in hospital

As St Vincent's Hospital gives the go-ahead to a specialist 100-bed, €22m cystic fibrosis unit, Lesley Anne Donnelly recalls her own family's fight for CF sufferers after she lost two sisters tragically to the illness at just 14 and 23 years old ...

CYSTIC fibrosis has rightly been the subject of a Herald campaign for action for several weeks now -- and I believe strongly that it is vital that it should continue to remain at the forefront of peoples' minds up to and beyond when the specialist CF unit is up and running in St Vincent's Hospital.

My sister Sarah died from cystic fibrosis when she was just 14. My other sister, Laura, passed away with the disease aged 23. Whatever I write here won't do either of my sisters justice. I really can't put into words all of the obstacles they faced and overcame.

Brave isn't a word that I feel adequately describes them.



Upset

Sarah lived a short life but she lived life to the full. For someone who had a terminal illness, I rarely saw her upset or without a smile on her face. Sarah loved animals and dogs in particular.

For her entire short life, Sarah was a patient of Crumlin's Children's hospital. It became like a home away from home for both Sarah and Laura. They made many friends there and loved the nursing staff.

Sarah was a happy-go-lucky girl who didn't let CF get her down. She was a massive Manchester United supporter and travelled over to Manchester to watch many a game with my dad. It wasn't easy for her, being so short of breath, to climb up the steps at the grounds but like everything else in her life Sarah just did it.

Her death had such a massive impact on our family. We always knew that both Sarah and my other sister Laura were seriously ill but you don't never think something so final will happen. But it did.

Laura had a long wait before she was finally called for her double lung transplant. She, her boyfriend Ross and all of her friends and family were elated when she was given this chance.

We all believed that this was it, Laura had finally been given a break in her fight against CF. In the year after she got her transplant nothing could hold her back. Clifden in Galway and Omey Island were her favourite places.

To my disbelief she actually cycled 26 miles up the Sky Road and onto Omey and back to Clifden. What an achievement for someone a year earlier had relied on her portable oxygen tanks to get around.

Laura achieved so much in her life, she obtained a degree in journalism from Griffith College Dublin among so many other things.



Aware

Laura was actually in Los Angeles with her boyfriend awaiting her flight home when she got really sick. She never recovered.

She was flown by air ambulance home to the Mater Hospital in Dublin and after a week of fighting and with all her family around her she passed away. This is real life, my life and I hope it makes you, the reader, more aware of what living with cystic fibrosis actually means.

My sisters have both passed away but myself and my extended family have never given up the fight for justice for those still battling with CF on a daily basis.

I ran the Dublin marathon in 2009 to raise funds for Crumlin in overdue appreciation for the care they gave my sisters.

Running 26 miles is tough... running 26 miles knowing your sisters are with you in spirit on the day is easy.

I do not have CF myself but I can tell you that all of those I have met over the years who do are the bravest and most courageous people I've been lucky enough to meet.

They have been promised this unit for years now, they have listened to promises being made and then broken and they have watched their close friends die.

What CF sufferers are asking for is not a bailout but a chance of survival -- but politicians and the Government in general don't tend to look at the people behind the headlines so I am hoping that maybe this will help. To anyone reading this article please help in fighting on behalf of CF sufferers.

Just to put it into perspective how important this new unit is, CF sufferers will no longer fear for their life every time they have to be admitted to hospital, they will no longer have to worry about the risk of cross infection from other CF sufferers, they will not have to worry about sharing a hospital ward with elderly patients when they are only themselves young and frightened.

Most importantly they will not have to worry to such a huge extent that maybe this hospital visit will be their last.

CF sufferers can pick up a bug that to you or me may go unnoticed but to them can be fatal.

Please help in raising awareness in order to give CF sufferers what they so richly deserve.

My sisters may not be alive to see the benefit of this unit but it is because I know how brave they were that I continue to tell their story if it helps in any small way to raise awareness.

Cystic fibrosis has changed me and my family's lives in so many ways. It becomes so much a part of you and who you are as a person.

In the years since Sarah passed away and then Laura, nothing had changed in terms of how CF patients are treated when they attended hospital.



FEAR

Laura attended St Vincent's hospital and I will always remember her telling me a story about how once in the middle of the night she woke up in the ward and there was an elderly woman at the foot of her bed, shouting.

Can you even imagine how scary that is for someone who is afraid as it is and is away from her family and friends?

These CF sufferers are someone's much-loved brothers or sisters, children, partners, and friends. It is so frustrating that their calls for much needed help has fallen onto deaf ears until now.

Laura had a double lung transplant in the Freeman Hospital in Newcastle, England. The care she received there was second to none.

We need to raise standards.

hnews@herald.ie

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