On Saturday 11th April 2009, Rachel Ilhan raised over £500 for the CMN research by walking 5 miles along the English coast. Rachel is 11 years old and has CMN covering her back and stomach. Rachel’s mum, Wendy, said “Rachel is a happy, confident, outgoing 11 year old who just happens to have CMN.”. When…
Caring Matters Now has been selected as recipient of a £4,000 grant from Jeans for Genes — a national children’s charity which raises money for the care of children with genetic disorders. Every half an hour a baby is born in the UK with a genetic birth defect or genetic disorder which could seriously affect…
Even amongst health professionals, awareness of CMN is low because it is a rare condition, so our first challenge as parents was to find information about the condition and what treatments were available. Fortunately, we discovered the Caring Matters Now website and were directed to the centre of expertise at Great Ormond Street Hospital led…
I was 6 years old and sitting in the bath playing with small toys, when I looked down at my skin and stared at the big brown, hairy, lumpy birthmark that covered all my back, wrapped around onto my tummy and continued down past my bottom onto the top of my thigh. As I stared…
I was aware that the midwives were not handing her to me right away. The midwife mentioned the baby was a bit slow to cry so she was going to administer some facial oxygen and did so. Then I heard the baby cry but they still did not bring her to me. The two midwives…
Hello, my name is Lynne, I have a son called Rhys, and he is 10yrs old and has CMN. Until 6 weeks ago we had never met anyone else with this condition. We met Jodi Unsworth in Liverpool, and many other lovely people who had children with this condition; we also met the children, which…
My daughter Scarlett was born nearly two years ago with a very rare skin condition called Congenital Melanocytic Naevus (CMN). No one in Cheltenham hospital had ever seen the condition and therefore were unsure where to send Scarlett, as she was not actually ill. To cut a long story short eventually we got to Great…
