My daughter Isabelle was born in 2009 with Congenital Melanocytic Nevus (CMN), a rare type of birthmark that appears in only 1 in 20,000 new-born babies.
CMN can have fatal complications including an increased risk of malignant melanoma (a type of cancer). Melanoma in this condition is at its highest risk duringchildhood and although melanoma is always an aggressive tumour, in children with CMN it is particularly aggressive and resistant to treatments.
However, neurological problems are the most common complication and as a result childrenwith CMN can have differences in their brain or spinal cord. Other much rarer problems include benign brain or spinal tumours, too much fluid in the brain, or abnormal brain structure.
In an effort to remove the risks associated with CMN, Isabelle's consultant arranged for her to have removal surgery when she was 2 years old, and although some pigmentation returned, she has not had any further complications. Unfortunately the risk of developing melanoma is still there because of the excess of melanocytes she was born with, so Isabelle will continue to attend annual checkups throughout her childhood to be monitored.
As the condition is fairly rare, the information we received during the first few years of Isabelle's life differed depending upon which consultant/registrar she sawand as parents, we were at times left feeling quite helpless . Due to the re-pigmentation following Isabelle’s surgery, we were advised that she would require further surgery, this is when I began to search for other cases of CMN and came across the charity Caring Matters Now.
The charity was setup by a CMN sufferer in 1998 to help support other sufferers and theirfamilies, to raise awareness of the condition and to raise funds for the CMN research.
Dr Veronica Kinsler, winner of the coveted Great Ormond Street Hospital 2015 Child and Family Award has been carrying out research at Great Ormond Street Hospital and through contact with Caring Matters Now, we were fortunate enough to be able to take Isabelle down to meet with Dr Kinsler and her team during December 2013. We have also had the opportunity to meet withother families.
It was Dr Kinsler that advised us against further surgery and to monitor Isabelle instead (which any parent would understand, came as such a relief to hear).
It costs £100,000 a year to fund research at Great Ormond Street Hospital in London. The charity does not receive any government funding; this comes only from direct donations and fundraisers arranged by the families of those affected by Congenital Melanocytic Naevus.
With the money raised so far, Dr Kinsler has recently found the cause of CMN, a mutation in a gene called NRAS. We now need to find the life-saving treatments to prevent any more suffering and the devastating effects it can have.
As a way to show our appreciation to Dr Kinsler and the team at Caring Matters Now, and to give some control back to Isabelle, we decided to start fundraising and this is where you can help!
Any donation, however small, can make a BIG difference to the research and will be greatly appreciated.
Thank you x
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