“When Evie was born and we found out she had cystic fibrosis it was quite scary. We didn't realise there was so much treatment involved. She is two years old now and she has physiotherapy twice a day. She has to take medication with all her food and multi-vitamins every day. Her physical therapy involves vigorous exercise that we have to do with her twice a day. It means that she can't eat for an hour beforehand. You have to do it first thing in the morning which is quite hard on her because she hasn't eaten. It’s hard for a little baby to understand having to bounce up and down on a ball without having had her breakfast.
Evie tolerates it really well. We go to Crumlin Hospital every three months for a check-up for her chest, her heart and her bloods. If she ever has a cough that I'm worried about, I can bring her in and it’s great to know we have that support. The service is absolutely amazing. All the staff are really attentive to Evie. She was premature as well so they’re just wonderful at making sure she’s doing well.
As Evie gets older and starts mixing with other children I might need more help and advice on how to manage infections and limit her getting infections. That's the critical thing really with her, taking care of her chest. Little kids pick up chest infections and I'm worried about that. That's my anxiety at the moment. We’re especially mindful in the winter months and I try to keep her in the fresh air instead of going to indoor places where people might have coughs and colds. When she’s older she will be going to these places though. The world gets bigger as they grow up.
When Evie started walking that was a massive moment for our family. She was premature, she needed lifesaving surgery when she born and she was diagnosed with cystic fibrosis. When she took her first steps it was so hard to believe that we’d made it to that moment. It was huge for us because after all she’d been through we never knew if she would walk. All we ever wanted was for her to be able to do normal things that we would usually take for granted. Those normal things turned out to be massive milestones in our lives.
Research into cystic fibrosis means everything to us. It means the world when people like Professor Paul McNally are working away on research and different trials. No parents want their child to have an age of mortality age, but hopefully Evie will live a long, healthy life. These things can't be done without the fundraising to support it. Childhood illness never touched my world until two years ago and we can't be thankful enough to these amazing fundraisers. People who are working so hard to do whatever they can for sick children and the spirit that involves and positivity that sends to everybody. It's just absolutely incredible. We're so grateful. You feel so much love for these people.
Evie is such a happy little girl now. She’s a great little eater, she loves climbing, she adores other children, especially her cousin who lives across the road, and we have two small little dachshunds who are absolute saints with her. I think she's going to grow up to be inquisitive and curious about the world. I think she's going to actually grow up quite sporty too. She loves to run and she loves action, slides and all that kind of thing. From the moment she was born she’s had so much love poured into her. I never felt like when I had to leave ICU at night that she was alone because the nurses and doctors loved her so much. She is now the most loving little girl you've ever seen, giving kisses and cuddles to everyone. It's 100% because of the care she got from the nurses and doctors in Crumlin and the love that she felt. I think she's going to grow up to be every special, loving little girl.”
Ellie, Evie’s mum.