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“I want her to know she can take on the world”: CF mum Laya
A smile that lights up the room
Robyn is our 11-month-old bubbly, funny, happy little girl, who has a smile that lights up any room she is in. She is such a strong wee lady with a lot of sass and she lets nothing phase her. Robyn loves Ms Rachel and Baby Shark, and any toy that makes a noise or anything she can bang together. She loves seeing people and playing with her big sister Phoebe.
Robyn was diagnosed after her heel prick test came back with a double gene of F508del. I got the call from Belfast hospital and the next day we were there seeing the team, as prior to the phone call Robyn wasn’t gaining weight. I was in complete shock and didn’t know what it meant for Robyn. I was so scared and devastated; my heart was broken and I thought I was going to lose her. My mind just jumped to the worse case scenario. I had only ever heard that CF affected the lungs, that it was an incurable condition and that people with it lived up to the age of 25.
Thankfully, meeting the CF team reassured me that everything was going to be ok. They made me feel so much better about her diagnosis and explained that there are lots of medications out there for her to live a good life.
A daily juggle
Day to day, Robyn has a schedule of medication spread through the day, physio twice a day, nebulisers four times a day, and with her having a nasogastric tube, her feeds are every four hours. As a family we stick to this schedule, and if we have plans, we have to work round the schedule. Having an active 2-year-old as well, we try to make sure she isn’t missing out on anything, but everything we do now has to be set at certain times or to Robyn’s schedule.
At the start it was hard juggling everything, but we have adjusted. I have all the equipment ready to go and I have a check list before I go anywhere to make sure that I have everything I need. Sometimes we have to cancel last minute if she is unwell, but we just take it day by day.
My hope for my daughter’s future is that Robyn goes out and takes the world by storm and shows everyone that she is more than her condition and that she can be anything she wants to be. I just want her to be happy and know she can take on the world and no matter what she does, I will be so proud of her.
Never be afraid to ask for help
My advice to other parents who have just received a new diagnosis is to reach out to support groups and don’t be afraid to ask questions. Don’t forget to take time for yourself to let it sink in, and speak to your friends, family and support network. Take the help and never be afraid to ask for it. Also, the best advice I got was do not Google! Enjoy your little bundle!
Fundraising for the Trust
Last September, I did a 30-mile walk with Robyn’s father and godmother and we raised over £1,000 for the Trust. We have also decided to host a fundraising night in June to raise awareness and as much money as we can for the Trust. Many businesses in Derry have donated prizes and we are overwhelmed by the support we have already been given.
To me, a life unlimited means a chance to live life to the fullest and making the most of every minute. Giving everyone the opportunity where nothing is holding them back. It’s a sliver lining!
We won't stop until CF does. Unite with us this CF Week and help make sure everyone with CF can live a life unlimited.
