Photo credit: gmj photography
Photo of me in March 2018 – 5 months pregnant
Thank you for stopping by, and a very warm welcome to my site, Supporting Cystic Fibrosis singers – singing for CF. My name is Emily, I am 27 and I have Cystic Fibrosis. My ultimate goal is to help other people with Cystic fibrosis who like me have a passion for music and also use it to improve their health.
This is just the opening chapter and my plans are only beginning to unfold and take shape, so watch this space for news and developments. I would really like this to be a positive space for others with Cystic Fibrosis to openly connect and to share their own stories and experiences and to use this as an opportunity to reach people and raise funds for CF and also in particular raise funds for specific individuals dealing with CF everyday (looking forward to elaborate on this later on).
A little more about me. I have just become a first time mum to a gorgeous little girl called Sierra, who is the center of me and my husband Simon’s world. She is such a happy little lady and a big inspiration to us both. I am a soprano and have been singing since I was 14, which began when I fell in love with the music from The musical, The Phantom of the opera. I made a random discovery that I could sing while singing along with the music. What is really interesting is that at the time even though I was born with CF I didn’t know I had it! I only discovered that all the chest infections, coughing and chronic sinus problems I had growing up was due to Cystic Fibrosis when I got my diagnosis at 22. It was a massive shock and it took both me and my family a while to adjust to the idea, but it explained so much. Thankfully I stay quite well and only have to be admitted to hospital once or twice a year normally for two weeks of IV (intravenous) antibiotics, which is a lot less than some of my fellow Cfers have to put up with. For me and for others like me, Cystic Fibrosis doesn’t define us as people. However, I can definitely say that my CF has helped shape me as a person and I strongly believe that it has led me to be part of some amazing experiences. When I was diagnosed late, at 22 it ignited a fire in me that drove me to pursue singing opportunities that maybe previously I wouldn’t have had the confidence to try. I entered a local performing arts competition and won, through that I met some amazing people and performed at some incredible venues, Highclere castle (aka Downton Abbey), Australia House (which was used to film Gringotts in Harry Potter; I love love LOVE Harry Potter), West End live in Trafalgar square, Leeds Castle, amongst others, which ended up with me singing on a West End stage in London with a large group of people who became like family. I didn’t plan any of these experiences, the opportunities just manifested themselves as I let go of my doubts and decided to live life to the full by not letting fear stop me saying yes to things. I’ve got my CF and husband to thank for that new-found perspective.
I went on to become part of the Virtual Cystic Fibrosis choir and recorded a single with my fellow Cfers called ‘One Voice’ (watch our video in the video/audio links section), we were also part of the single ‘Stand together’ which both featured on the ‘Stand together – Choirs with purpose album’. We as the VCF choir were featured by the BBC and the Telegraph which really helped spread our united message along with creating the much-needed awareness for Cystic Fibrosis and cross infection. I think this last experience has really inspired me and fueled my passion for doing something good in this world by helping others. I have witnessed first hand the incredible psychical and mental health benefits that singing can bring and am looking forward to incorporate this in to my fund-raising and projects. I truly hope I can offer something big or small to those who need it most and encourage others to do the same. Please do get in touch if you have any personal stories, experiences or would like to get involved X
I will end this intro with a favourite quote of mine, which I am trying to live by (which for me, translates to living life to the full):
“Don’t die with your music still in you” – Wayne Dyer