Katie was diagnosed at 18 months. Despite many of the symptoms of CF, no one recognised what the problem was. I had never heard of CF until I got talking to another mum on the children’s ward and everything just fell into place. I asked for her to be tested and it came back positive for CF.
Since then we have had to learn about keeping her as well as possible with all of her treatments and medications. She has had a few bad years with multiple hospital admissions but she is very stubborn and determined to not spend any more time than necessary in hospital. She even made a point of being out of hospital in time for her brothers birthday last year. She also has CF related arthritis and inner ear problems which affects her balance and co-ordination. Despite this she has learned to drive to give herself as much freedom as possible.
When she was 8, her two younger cousins had to come and live with us. They both have lots of learning, behavioural and attachment problems so they are very challenging. My nephew is also autistic. However, she accepted them into our family and tries where possible to help me with them.
She is now 18 and a talented musician. She has taught herself to play the guitar and keyboard and is learning to play drums. She is also an amazing singer with a beautiful voice. She studies music at college while juggling a part time job and all her treatments, medications, and hospital appointments.
Her favourite band is Panic! At The Disco, the lead singer is Brendon Urie who is a massive inspiration to her. I managed to get her concert tickets earlier this year and made one of her dreams come true. Despite trying many avenues I was unable to arrange for her to meet him.
I am incredibly proud of the determined, brave young woman Katie has become and just want to create as many memories and dreams come true as possible for her.