As I’m sure all parents of children with CMN feel, it was a shock when Arizona was born with a large birth mark on her back. Although our midwifery and paediatric teams were fantastic, they hadn’t seen CMN before and were unsure of what it was.
We were eventually referred to Caring Matters Now and received lots of support and really useful information about the condition, and we managed to get an appointment to see Professor Kinsler by the time Arizona was 2 weeks old.
As a family we have discussed our worries over Arizona’s confidence in the future, as well as how she would deal with her obvious physical difference at school and later in life. It was my Dad’s idea for us to all chose one of her many birthmarks and have them tattooed to us, to show Arizona she should be proud of the beautiful marks on her skin; and what better way to raise awareness and money at the same time!
We are so grateful to all the our friends, family and colleagues for their support and generous donations – we can’t wait to see what future research into CMN has to offer!