PARENTS IN BATTLE FOR LITTLE LILLY
THE parents of a one-year-old girl from West Wales claim they have been forced to try to raise thousands of pounds so that she can have a large birthmark removed from her face.
Lilly Owens, from Ammanford in Carmarthenshire, was born in 2019. Within moments of her birth her parents Aarron and Katie noticed a mark on her face.
Months of tests followed before it was confirmed that Lilly had been born with a condition called Congenital Melanocytic Nevus (CMN), which produces benign, tumour-like malformations resulting from the faulty development of pigment cells.
Lilly, who turns two in September, has a large mark on the right side of her face, which is thought to only occur in around one in every half a million births.
Now, her parents say they have been left dismayed at the fact Lilly cannot have a procedure to remove the mark until she is old enough to make the decision herself – leaving her parents concerned she may suffer bullying and become self-conscious as she grows older. The condition also increases the risk of other health problems.
Her parents’ claim their only hope is to raise £16,000 so their daughter can undergo facial skin graft surgeries at a private hospital in London.
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.
Having initially been seen at Glangwili Hospital in Carmarthen, Lilly was referred to Morriston Hospital in Swansea. But her parents claim it soon became apparent that treatment would need to be funded privately.
“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,” said Katie Owens, Lilly’s mother.
“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.
“As parents we felt we had no choice but to seek second opinions and selffund consultations from researchers and professionals who have experience in Lilly’s conditions at Great Ormond Street Hospital in 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, 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.”
More than £2,300 has already been raised on the page – at https://uk. gofundme.com/f/help-lilly-seek-specialist-advice-and-treatment – in an effort to get Lilly the treatment, but there is still a long way to go to reach the amount required.
Hywel Dda University Health Board has confirmed that any decision on whether to fund Lilly’s treatment is made by the Welsh Health Specialised Services Committee (WHSSC), and not the health board itself.
A WHSSC spokeswoman advised that the Welsh Health Specialised Services Committee is unable to comment on individual patient cases or the outcome of individual patient funding requests.