Spotlight

The CF Community is a far reaching community made special by the connections and relationships that exist between PWCF, their families, their friends, their support network and the CFI team. In this Spotlight we hear two unique stories from people who are part of the CF community but in very different ways. Lucy is a volunteer with CFI and best friend of Triona Priestley, who sadly passed away at 16, and Edel - a PWCF and a new Mum.

Volunteer Name: Lucy O'Hanlon From: Dublin, Ireland

Position: Malin2Mizen Cycle4CF Committee Member

Cystic Fibrosis became a huge part of my life when I met my friend Triona Priestley who was a person with CF.

Raising funds for Cystic Fibrosis Ireland was something we always tried to do but when Triona passed away in 2014, this became even more important to myself and her friends. On the back of a successful #SongForTri campaign which resulted in Ed Sheeran singing to Triona as she passed away, we took every opportunity to fundraise for Cystic Fibrosis Ireland and still do. "Would you like to come down to Mizen Head and greet four cyclists who have just cycled the length of Ireland in honour of your friend and in aid of Cystic Fibrosis Ireland?" - we were asked back in 2015.

Little did we know that at that time, that cycle would become an annual event – Malin2Mizen Cycle4CF, that not only raises vital funds for people with Cystic Fibrosis but would also gives us a space to remember Triona each year and if I am being totally honest changed my life.

I met Triona in school when we were 12 and from that moment on, she was one of the girls. The 8 of us, as thick as thieves, were rarely seen without each other. To this day we are all still best friends and know that Triona is there with us. After the first year of the cycle, we agreed to go back, we didn’t even have to think about it really. In 2017 I agreed to take part and cycle in Malin2Mizen Cycle4CF, cycling 640km from Malin Head to Mizen Head over 4 days.

I wasn’t really sure what I was getting myself in for but I knew it would be tough. But what I didn’t expect was the one thing that kept the wheels turning, the sheer

Keeping The Wheels Turning: Lucy O'Hanlon

scale of camaraderie. I remember at one point we cycled through a large open area and there was a strong cross wind. I was starting to struggle just as I heard, "tuck in close to me and I’ll break the wind for you". That is what makes this cycle so special.

Over the four days on the bike I laughed, I cried, I listened to life stories from people from all walks of life but most importantly I achieved my goal. 4 days and 640km’s later I had successfully cycled the length of Ireland. It was a feeling I had never felt before. Sheer exhaustion masked by sheer joy and a real sense of achievement.

Since then, I have gotten involved in volunteering at the cycle. I cannot put words together that would do justice to describing the support you receive as a cyclist along the way. You are clapped into every stop and cheered on as you leave. At every moment you have someone encouraging you to keep going. The support team for Malin2Mizen Cycle4CF do such an amazing job that you don’t have to think about anything but cycling. They even leave your bag in your hotel room each night for you!! And of course, the craic the support crew bring is unbeatable!

For 2023, I am part of the Malin2Mizen Cycle4CF organising committee and I'm looking forward to helping to make next year's cycle even better, if I can. My reason for being involved in a personal connection to Cystic Fibrosis Ireland. But for others it is the personal challenge of cycling the whole length of Ireland, maybe it’s always been a lifetime dream to do something like this, maybe it is wanting four days of mighty craic. Whatever the reason, each year the cycle helps me to remember Triona in a very special way with very special people, raising funds for CFI who help so many people with CF and their families. And what could be more special than that.

What are you waiting for? Sign up to the adventure of a lifetime today and register now for Malin2Mizen Cycle4CF 2023 at www.cfireland.ie

Dreams can come true: The first year of parenthood

Our beautiful, little Shelby-Rose is 13 months now and the time has absolutely flown by. We are so in love with our little girl and the beautiful life we now have. ShelbyRose absolutely loves swimming. Like her Daddy, she adores the water and loves loves loves music and drums. Who would have thought dreams really do come true, I'm living the very life I prayed so hard for.

Life has been so amazing since the day we conceived Shelby-Rose. My pregnancy was a dream in every way. I sailed through it all and had an incredible labour and delivery.

When I was going through my pregnancy, my absolutely amazing obstetrician Dr. Mairead O'Riordan had a lot of concerns at the start about a natural birth for me, and would have preferred a section. But as the months of my pregnancy flew by, she was amazed and really started to believe in me that I could have the wish I wanted and have a natural birth. So we set our minds to that.

My due date was the 18th of August and Mairead wanted to induce me as soon as I felt I couldn't take anymore. Like, if Shelby was to press up on my lungs and cause me more shortness of breath, but of course Shelby-Rose didn't do that and at 39 weeks I was still flying around - not once out of breath - as was Shelby the whole pregnancy. She never ever let me feel tired or like she was taking from me and you know what, she's still the very same now to this day. She is an incredible little girl, who is so, so determined and when she has her mind set on things, just does them (Paul always says exactly like her Mammy). Pure determination.....

Anyway, at 39 weeks on the 9th of August we began induction and after one gel nothing happened. So on the 10th August, they did another gel. And not much happened. I progressed a little but on the morning of the 11th of August at 11am they decided to break my waters. And I went straight into labour, contractions were very close together almost straight away, so we started the epidural drip. Mairead made sure that the epidural would happen so that I could relax and keep strength for pushing.

After the epidural I completely relaxed and was chatting and eating tea and toast all day LOL. By 5pm I was 10cm, and I was told to relax more as Shelby was moving down more and more, and by 9pm I was ready to push. This

was the worry - that I’d push too much or too long and I would affect my energy levels and put too much pressure on my lungs. So I pushed and pushed and felt OK, but they were worried so they said they would help me a little with vacuum or forceps.

I’ll admit, that scared me, but at the same time, I was willing to do anything to make sure Shelby was out and safe. They called the doctors but they were delayed. I really do think it was all meant to be the way it was because they came into the room twenty minutes later and asked “OK are you ready for us to help you?”. I said yes and they checked but Shelby was almost out - she had done it all herself. I pushed three times and she was out! They put her straight on my chest I was in complete shock it was so amazing. Shelby was six pound 12 ounces of perfection, I never had one pain afterwards and was up walking around the next morning. It was amazing.

Our whole pregnancy, labour and birth were so amazing. Mairead made a special request for us to make sure Paul was allowed in from the second I was admitted for induction and that he was allowed to sleep in the room with us every day and night. They fed him all day, every day and made sure the three of us were well looked after and always together. The reason she put in such a special request is she felt I had so much to do with my CF regime and that Paul could look after Shelby-Rose so I could not fall under with my meds.

We stayed in the hospital for 7 days because we eagerly just wanted to have the heel prick test done. This was a scary time. We left the hospital awaiting results of the heel prick test and we were so worried, but we prayed and believed she wouldn't have cystic fibrosis.

We heard nothing so about a week later we rang and were told the amazing news. Paul knew first and rang me as I was in Cork with my Dad. I looked at my Dad and told him and he burst into tears driving. We had to pull over. It was such a special moment. My parents had carried such worry after losing my brother Seamus to CF at 10 months old and were afraid all my life wondering if it would take me. My brother and his wife had a little boy 3 weeks later, our beautiful George and he was also given the all clear. How lucky are we as a family to have our two very own miracles sent from heaven.

Paul and I took to parenting so easily. I won't lie Paul was more maternal than me at the start. I was very nervous and I had post-natal depression - I never felt anything like it to be honest - and it made me question myself on a new level. People need to look after the Mother when baby arrives too because hormones really can really mess with your mental health. Thankfully with lots of talking, crying and meditation and prayer, that horrible feeling lifted from me.

I couldn't have picked a better husband and father to have my little baby with. I thought I knew love before but now it's even deeper. Who knew the love a child can make you feel like this. Personally, I feel like your own child opens a part of your heart and your whole being you never knew even existed within you,. Nothing is ever too much for Paul when it comes to me and Shelby-Rose. He has done every second night feed since the day Shelby was born and has supported me for weeks when I was ill with IVs.....

I’ve had to have two sets of IVs very close together in April of this year and no matter what I just couldn't get better. I had to leave them both for ten days because they had to try and add IVs in that I never had before so I had to be admitted and with Covid still happening I wasn't allowed see them or even go out to the door to them. That was tough on all of us but once again Paul took charge like he always does and was brill. Thankfully my health started to get better once I got all the drugs out of my system, but it was tough. I was allowed home to finish my IVs and found I had a drive in me that I didn’t have before to do them and everything else too.

We stayed cocooning for eight months of Shelby's life as we just didn't want Covid for any of us. After all, we had stayed in for almost two years, even though my whole pregnancy we were alone because we didn't want to risk Covid - no way no how!

After those eight months, Paul and I had a good chat about it. Paul knew how eager I was to get back out there socially and the impact that isolation for two years had on my mental health as well as post-natal depression. So I found a job that I truly love with a lovely Manager and great girls who work there. It’s ran so well and there's no unnecessary pressure on staff. The job is in fashion and we all know how much I love clothes LOL! Shelby was only 8 months but we knew I needed it and once again Paul supported my needs and pushed me to go for it, and I am a stronger person for it.

Unfortunately Covid finally caught us and as Paul likes to tell me I brought it home LOL! I passed it on to Shelby-Rose and then Paul got it. Would you believe I had barely any symptoms! I had a sick tummy and a little few aches and pains, but Paul and Shelby-Rose started to become very ill and Shelby-Rose was admitted to UHW paediatrics for almost a week. She had febrile convulsion from her temperature and they just couldn't get it down. Her heart rate was 200 and I was terrified. I had to stay in isolation in paediatrics with her but the team there were amazing. Paul even ended up in A&E with his throat was closing but we all healed eventually about 3 weeks later. But we are all still baffled how well I breezed through it. I will say, it did hit my chest, well it inflamed my CF when Covid was gone. My chest kept filling up so I took lots of orals and a new nebuliser antibiotic and they worked a trick.

But other than that life really is amazing. We savour all the little things every day; sitting at the table eating beautiful food, laughing, loving, playing and we love the beach. To come from a life where you’ve been so ill for so many years and your life was so bad that you couldn't work and you’d have nap every day because your body was being hammered so much by CF, to now being a Mother, a wife and working, sometimes I cry with gratitude. I look up at the sky and I say "how is this my life?" I am so grateful for everything, every day with the people I love and doing the simple things that make me happy. Kaftrio has been so amazing for me and so many others. I still do get frequent Infections but I am so much stronger now when I have an infection than I was before. I haven’t been feeling great the last few weeks but I'm trying to get better.

So, CF has not gone away and I still need to keep up my treatment regime. It’s hard to fit it all in and not feel bad for Shelby waiting around for me but I'll never ever skip a neb because that is what keeps me well and healthy for her in the long run. I might be facing more treatment soon to try new orals I've never had before, and hope and pray they work. But that's life with CF and life now with CF is far different than the life I had 6 years ago. Shelby is joy, that's the best word to describe her. We walk into shopping centres or anywhere and people stop in their tracks because she has a smile from ear to ear for everyone. She is so, so social and for a child who was in isolation for so long she is just amazing in every way.

She is crawling now and pulling herself up to standing and walking when we hold her hands she is only weeks away from walking. We are so blessed and sometimes we have to pinch ourselves for all the beauty in our life

Love always Edel, Paul and Shelby-Rose