The parents of a one-year-old girl with a large birthmark on her face claim they have been forced to raise £16,000 to have it removed at a private hospital in London.
Lilly Owens, from Betws, near Ammanford, was born with a condition called Congenital Melanocytic Nevus (CMN), which are benign, tumour-like malformations resulting from faulty development of pigment cells.
Those born 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.
Lilly's parents Aarron and Katie say they have been told by healthcare professionals that the mark cannot be removed until she is old enough to make the decision herself. However, her parents fear that Lilly will suffer bullying throughout her younger years.
Lilly's father Aarron said their only option is to raise £16,000 so that she can undergo surgery at a private London hospital.
Aarron said: "Lilly needs skin graft surgeries but our local hospitals have said it will need to be Lilly's decision so they will only look at operating when she is older.
"This isn't the news we wanted to hear, so we were forced to look at alternative options and second opinions."
Lilly Owens, who was born with a condition called Congenital Melanocytic Nevus Picture: Aarron Owens
Lilly's mother Katie said: "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.
“As parents we felt we had no choice but to seek second opinions and self-fund 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.”
Lilly with her sister Sophie and brother Jacob Picture: Aarron Owens
Aarron and Katie said they were forced to "bite their pride" and set up a fundraising page to get Lilly the treatment.
"We have both always worked and supported ourselves but this is something we have to do for our daughter," said Aarron.
The couple have said up a fundraising page which can be found here.
Lilly Owens, who was born with a condition called Congenital Melanocytic Nevus Picture: Aarron Owens
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.
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