My Story

MACS (Microphthalmia, Anophthalmia & Coloboma Support) might be a small charity, but it's one very close to my heart. When my daughter was diagnosed at just five weeks old with bilateral coloboma, it turned our lives upside down. We spent weeks waiting to find out how she would be affected by this rare condition that seemed to come out of nowhere, adding the already stressful period of looking after a premature baby and learning how to be parents.

In that time, MACS were there. They were there with information that was clear and concise, not sugar coating the ramifications but not over stating them either. They were there with a community that offered support and fellowship, with other parents that had lived through the same uncertainty.

We were lucky. Our daughter does have coloboma, but it hasn't affected her vision. She has had fantastic care from the RUH and is a bubbly, happy four year old now who is about to start school. But we know that other parents might not have been so lucky, that there are many families out there that need the unique care that MACS offers. And that's why I'm running the London Marathon next year. Not only to raise awareness for very unusual conditions that have a huge impact on those who have them, but also to give something back to the charity that we're there for us.