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“When we were given his diagnosis we weren’t actually expecting it, Chris was at work and so it was lucky my mum was with me. It hit me like a ton of bricks.”
“You feel really alone after diagnosis, nobody really understands what you’re going through. I cut myself off from going out on playdates because it just brings home how behind Charlie is and the things he won’t be doing.”
“I guess when we got the diagnosis, yeah, our journey began. A journey of completely accepting - and letting go - that your life will never be normal with him and accepting that that’s ok and that we’re going to be happy and that Iggy’s clearly happy. It began the process of accepting what that means.””
“Emotionally, getting the diagnosis was extremely hard. I didn’t sleep, didn’t really eat, didn’t do anything for the first two weeks. I really believed he was going to die.”
“As a family it wiped us out, it really did wipe us out. We went through really, really dark times with Lizzie, in a different way to Christopher. She too took to self-harming. She didn’t want to be here.”
“After the diagnosis we just threw ourselves into fundraising and finding out as much as we can in the hope that new drugs and treatments will come along and help to save his life. We hope that he’s in the generation that will survive.”
“I think it is important to consider how much information to give at the point of diagnosis. I don’t think parents can take it in. They will hear the words you utter, that is, they have this condition and they will hear no more.”
“When we were given her diagnosis, they told us that she would have a limited life expectancy and was unlikely that she would reach her teens. Telling people was hard. To keep on repeating it to everyone would have been incredibly hard so we just asked our parents to share the information.”
“It was really hard all the way through the pregnancy and we never knew from one appointment to the next what they would say. We struggled as a family and it was heart-breaking having to explain to my other two children that there was a possibility she could pass away.”
“It may seem extreme to people that we would go to such lengths to get a diagnosis, however, the need for me was that if there was anything, I could have done to help Amy, and to stop her from deteriorating I would have gone anywhere.”
“It is never easy getting a diagnosis but we were told on a Friday afternoon and we were given very little information. The consultant and dieticians who could give us the answers we needed were not available until the Monday and so we had a weekend of not knowing how this condition would affect our baby - it was terrifying.”
“The impact of her diagnosis was huge for me. I really struggled and was just at a loss about what to do. I didn’t step outside the door for what must have been two years.”
“When we were given his diagnosis we were devastated but - in some strange way - a bit relieved as his diagnosis could have been so much worse.”
“As a parent, her diagnosis destroyed me and it still does every-day. There was a time when we were in a very bad place, but you’ve got to dust yourself down and think: ‘ok, we can either let this destroy us or we can live as best a life as we can’- that’s what we decided to do”
