Fundraising will pay for treatment of Lilly’s mark
ATWO-YEAR-OLD girl with a large mark on her face will have it removed by doctors after her family raised £17,000 to stop cruel stares.
Toddler Lilly Owens was born with a rare condition that caused the birthmark-like growth on the right side of her face. Her family feared Lilly would suffer years of “cruel words, stares and bullying” because of the mark.
Parents Aarron and Katie were shocked the NHS would not remove it until she is old enough to make the decision herself as a teenager. So they managed to raise money to pay for surgery at Great Ormond Street Hospital.
Nurses told the family at her birth it was probably a birthmark – but the condition is called Congenital Melanocytic Nevus. It produces benign, tumour-like malformations and affects just one in half-a-million births.
Lilly’s parents raised more than £17,000 from “friends, family, colleagues and even complete strangers”.
Katie said: “After months of discussions with our local health board, we were advised that they will not operate until Lilly is of an age to make the decision herself, if at all.
“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. The long-term effects to Lilly’s mental health and well-being 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.”
Mother-of-three Katie said privatelyfunded consultations have now given the family “answers and reassurance” about the options available.
“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, and the sooner the better.
“Even after presenting the findings and recommendations of Lilly’s condition 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 will now have “two or three” facial skin graft surgeries.
Their appeal said: “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. This procedure will not only change Lilly’s appearance but will also hugely reduce the risk of health complications that could arise from her condition.”
Hywel Dda University Health Board said any decision on whether to fund Lilly’s treatment is made by the Welsh Health Specialised Services Committee and not the health board itself.
A WHSSC spokeswoman said it was unable to comment on individual patient cases.