peter
“As parents, we think of ourselves as our children’s educators. But if we allow them to, our children can teach us so much. My daughter was just three-weeks-old when she was diagnosed with Cystic Fibrosis. I thought our world was crumbling down around us. And while I hate the disease with every cell in my body, our daughter has brought out the best in everyone in our family. She is stronger than anyone I’ve ever met and we all feed off her strength. Her spirit is contagious and it makes me want to do everything in my power to improve her life and the lives of everyone suffering from CF. I never thought I’d have the courage or energy to start a lobbying campaign, but when the CF drug ORKAMBI was refused funding, I had to help. I wanted to amplify the voices of CF campaigners. So, we created a social media campaign designed to give the CF Community tools to lobby with. Videos, photos, weekly posts, pre-written tweets and emails – as much inspiration as possible so they could have their voices heard. I also started a blog called ‘My Little Miss Salty’ to raise awareness and tackle the mental struggles that parents of children with chronic illness deal with. I never thought I’d put myself out there like that, but I’m so inspired by my daughter that I’ve found myself opening up and speaking out in ways that I never knew I was capable of. She is most definitely my greatest teacher and I am blessed to share my life with her.”