Lilly's CMN Journey
After a normal pregnancy and a straightforward birth, in 2019 we welcomed our baby girl Lilly into the world. From the minute we met Lilly we knew she completed our family; she was beautiful, strong and certainly had a strong pair of lungs. It was not until moments after birth that we noticed something was not right. On lifting Lilly from my chest, we noticed a large, pigmented region on her face and smaller regions over her body. Paediatricians and midwives tried to reassure us it could be a mole or a birth mark but would refer us to the dermatologist’s team to investigate further. After months of uncertainty and tests we finally had the definitive answer we had been waiting for, Lilly was born with a condition called CMN (Congenital Melanocytic Nevus).
Congenital Melanocytic Nevus or CMN are visible pigmented (melanocytic) proliferations in the skin that are present at birth. Lilly was born with a ‘giant’ congenital melanocytic nevus which only occurs in 1/500,000 births. There has been no evidence to date of the cause of CMN, but they believe it is a sporadic genetic mutation that occurs after fertilization (6-12 weeks gestation). Individuals with CMN have increased risks of melanoma and risk of complications on their central nervous systems. The nevus skin is fragile, can become itchy, produce thick hair, and some may even lack sweat glands which can cause overheating. We are lucky that to date apart from the continuous trim of Lilly's facial hair on the nevus, Lilly’s health is good and her MRI has come back clear meaning that the risks of further complications are low but cannot be ruled out for developing in the future. If you would like to know more about CMN please visit the charity https://www.caringmattersnow.co.uk/
After months of discussions with our local health board, we were advised that they will not operate if at all until Lilly is of an age to make the decision herself. This statement was hard and still is hard to digest as a family as for the next 10-12 years she must go through the cruel words, stares and bullying from other children as well as adults which the long-term effects to Lilly’s mental health and Wellbeing is unthinkable. On top of these concerns, we have the continuing worry of any further complications which may or may not happen as she gets older. As parents we felt we had no choice but to seek second opinions and self-fund consultations from experienced researchers and professionals who have experience in Lilly’s conditions in Great Ormond Street London. These consultations unfortunately had to be privately funded but have not only given us answers and reassurance but have also highlighted the options available to Lilly with recommendations that the operations are undertaken the sooner the better. Even after presenting the findings and recommendations of Lilly’s condition/treatment to the local health board they have still refused to support and fund the operations Lilly is entitled to meaning we as parents must try and find these funds ourselves.
Lilly has been given the opportunity to undergo 2- 3 facial skin graft surgeries which will not only change her appearance but allow her to lower the risks and give her the best start in life. We as a family have gone through a roller coaster of emotions which is starting to influence not only Lilly’s but also her siblings and us as parent’s mental health and wellbeing. After sharing our story people have reached out, wanting to help us, so we have bitten our pride and have set up this page. We have always worked and have always been independent and found this difficult to ask for support when needed the most, but we need to swallow our pride for our daughter Lilly.
We are in a time of uncertainty and can appreciate not all can or willing to contribute but if you cannot then please share Lilly’s story. We hope by doing this we will not only raise funds but also to raise awareness of CMN and the charity Caring Matters Now.
Thank you for taking the time to read our story!
