What county in Ireland are you from/living in?

My name is Rachel O’Rourke and I am 22 years old from County Meath.

When were your first diagnosed with Cystic Fibrosis (CF)? How has it affected you?

I was first diagnosed with CF in 1998, at one day old. I had meconium ileus and no history of CF in the family. Daily, up until December 2020, I had rigorous morning and evening treatments, as do most people with CF, along with taking enzymes throughout the day to help with food digestion. I have been lucky in that my CF has been mostly manageable over the years and my lung function has been good. I try to limit how much my CF affects me by keeping positive and active. Since a young girl, I have been heavily involved in horses which kept me fit. Over the years, I have continued to run and travel. My CF affected me most during my Leaving Certificate year where I spent a considerable time in hospital.

Since then, my hospital admissions became more frequent, especially after exam seasons, and my lung function started to decline. Whilst 2020 has been memorable for many for the wrong reasons, I will remember it as the year I was blessed enough to start on Kaftrio. At a time when my health was starting to slip and becoming a little frightful, I took part in a research project which enabled me to start the life changing drug. Since December 2020, my lung function has drastically shot up, as have my energy levels, and my hospital admissions have been a thing of the past. Whilst I do stay active the biggest advantage of Kaftrio, for me, is that it allows me to put my all into study and exams without the need to almost pre-book two weeks in hospital once the exams are over.

Tell us a little bit about yourself, such as what you like to do for fun or why you decided to study Law?

Currently, I am a paralegal in a solicitor’s firm and studying for the FE1 practitioner exams with a view to starting my traineeship (apprenticeship) and studying in Black Hall Place to qualify as a solicitor. I recently obtained a First Class Honours in my Bachelor of Laws Undergraduate degree at Maynooth University in May 2021. I am very passionate about the law and have enjoyed my Undergraduate Degree while working part-time in a firm.

The Department of Law at Maynooth University has given me numerous opportunities to better myself including recently publishing a legal book, namely “A Guide to Student Rights”, with three fellow students aimed at providing legal information in a clear, concise, and easy to understand manner. Whilst it is tailored to cover areas of law for students, many aspects are applicable to all and it is freely accessible via the Maynooth University Free Legal Advice Centre (MU FLAC) website. During my time at MU FLAC, we held numerous clinics online via Zoom to provide free legal advice to those who needed it most – especially throughout the last year for people who found themselves in difficult situations. I was fortunate to be elected as Editorial Officer for MU FLAC by my peers in my penultimate year of my Undergraduate Degree and again as President in my final year. My involvement with MU FLAC has truly been one of the greatest privileges to date, as I personally believe promoting equal justice for all is essential in society.

Outside of my involvement with FLAC, study, and work I enjoy hiking and travelling. Hiking gives me a way to clear my mind, see our beautiful country, a great day out (when you get the good weather that is) and clear the lungs! I am passionate about travel thanks to my Mam providing me with the travel bug at a young age. I really believe to open your eyes to all the world has to offer puts your own life into perspective – the good and the bad! I am a keen advocate for travel and would encourage everyone to go. I was fortunate to have the opportunity to walk over 100km of the Camino de Santiago with my Godfather/great friend. No doubt it was a challenge, difficult in places, and starting off I was not sure if the lungs would carry me to the Cathedral in Santiago! We took it at our own pace, one foot in front of the other and we got there – a useful motto to apply to much more than a pilgrimage! A truly wonderful experience with a lot of life lessons. I also threw my bag on my back and went interrailing with my college roommate for one summer. We visited ten countries in over three weeks. We had planned to stay out in Europe for just one month but unfortunately my body got tired, and I struggled to keep on weight. There came a point where I had to listen to my body and call it a day, but it is a strength to recognise when you have had enough. As learned on the Camino, you are only ever on your own journey and need not compare yourself to others. Whether it is halfway around the world or your next county over, a change of scenery and pace of life for a few days does not do anyone any harm. Travel is a rich experience and an exciting way to invest in yourself. I’m looking forward to getting back out there when the world settles, to have a laugh, meet new people and immerse myself in new places.

How do you overcome the extra obstacles that come with living with CF?

Setting goals tailored to you. Only you know what you and your body’s limits are so push yourself often but be able to recognise when you ought to call it a day too. Some days your goals may be running a certain distance, or passing your driving test, or even bigger goals such as careers. Other days it could simply be doing treatments or brushing your teeth and that is okay too. I think knowing your body and staying in tune with it is very important therefore it is crucial to tailor your goals to you. Setting goals, thus planning for your future is very helpful to get you through those low days and periods life brings. Have something to remind you of all you have achieved this far so that looking back on it will propel you to keep going. This is why I set up my Instagram account @makingmybreathscount to remind myself I have a limited amount of breaths in this world, shorter than many due to my CF, which is why it is even more important to enjoy all life has to offer and make every breath count.

What keeps you motivated in your day-to-day life, particularly in staying positive through the pandemic?

A positive life will never flourish from negative thoughts. The last year has been difficult for everyone, especially those cocooning. I continued to work and study and try to create a routine. It was difficult, in particular, going back out into society for shopping, walks etc. As previously mentioned, I set up an Instagram account back in 2018 to document my life milestones such as travel, career progression and elements of my CF. The main aim of this Instagram page was to remind myself of the colour in my life on those dark days when my body or attitude was not playing ball. I find the key to staying positive is to take joy in and appreciate the little things whether it was Zoom calls with my friends, coffee walks & hiking or sitting down with a cuppa tea – after all they are the big things!

Why the Julian Benson Cystic Fibrosis Foundation (JBCFF)?

I am proud to say I am an ambassador for the JBCFF for this years Vhi Women’s Mini Marathon. Naturally this charity is close to home for me and a very worthy cause. The charity established in 2018, provides assistance to persons with CF and their families. Currently, the charity is working on a house close to St. Vincent’s University Hospital in Dublin. This home will provide families of CF in-patients with accommodation and allow those who travel long journeys to spend some time with their loved one. The charity is also developing a coastal retreat to provide persons with CF a relaxing and calming space to stay while suffering from ill-health.

Follow and keep up with JBCFF on Instagram @jbcffoundation or read more about their work on www.jbcff.com.

It would also mean a great deal if you could spare whatever you can and donate to the charity at:

https://www.givengain.com/ap/rachel-orourke-raising-funds-for-julian-benson-cf-foundation/#timeline