My daughter Jodi, was born with the severe skin condition called Congenital Melanocytic Naevus (CMN for short), which can be life threatening. This condition showed as dark brown marks, one of which covered 80% of her body. There were other marks known as satellites, which were too numerous to count.
From birth Jodi had 30 plus operations to remove some of the marks and also to make the largest mark on her body look more acceptable.
After 16 years of treatment, she decided with us that she would not have
any further operations. This was because the main mark was starting to show
through again despite all the trauma she had bravely endured during the treatment.
At the age of 15 Jodi was asked by the UK’s leading specialist for CMN, if she would consider starting a support group for children and parents affected by this condition. Without hesitation she agreed and soon she was in contact with parents of children with CMN. The charity - Caring Matters Now – currently supports over 300 families across the UK and also families further afield, when requested to do so.
The charity needs to raise over £100,000 per year to support families and also - importantly - research into this condition. To date the research has produced amazing results, including finding the cause by identifying the ‘rogue’ gene. The research is now striving to find a cure.
All proceeds from this challenge will go to this charity which is close to our family. THANK YOU!