The family of a 12 year old girl from Clare who has a rare form of cancer are raising money for a specialist, life-saving operation. Layla Kelly, who is from Kilfenora and attends Kilnaboy National School, is described by her family as a bright, beautiful and determined young girl. She has been bravely fighting an extremely rare and aggressive form of cancer called adrenocortical carcinoma since 2023. Layla has two younger siblings, Jack (9) and Alannah (5). "Layla is an incredible role model for them and an inspiration for us, her parents," Layla's parents, Teresa and Brian, told RSVP in a statement. Back in 2023, Layla began experiencing back pain and fatigue. Her parents were concerned as she was a very active and healthy nine year old at the time. "She was playing soccer, football, swimming two days per week and dancing, at the time," they explained. "All of her joints and her back were aching and in a matter of weeks all sports had stopped due to chronic pain. Layla was diagnosed with Cushing's disease. As a result of this, she was then diagnosed with adrenocortical carcinoma. This is a rare cancer, especially in children. Layla’s presentation of the disease was unique in itself." It was then discovered that Layla had a tumour on her adrenal gland, and in early August, she had surgery to remove the tumour and her adrenal gland. "After surgery, Layla seemed to be recovering well. She got back to school and got back in the pool 12 weeks post-surgery." 13 weeks after the surgery, a scan showed another tumour had returned and was sitting where the adrenal gland had been. "It was very aggressive and so Layla needed to have another, more invasive surgery. This was done in February 2024. They removed the tumour, and because of its aggressive nature they also had to remove her right kidney and part of her liver." Layla's parents say this was a very complex surgery, but Layla's medical and surgical teams were happy with the result. "She also had to undergo six rounds of really intensive chemotherapy (six days at a time) and she was on daily oral chemotherapy medication." The chemo made Layla very sick and she was unable to eat or keep tube feeds down. "Layla ended up on TPN feeds (intravenous nutrition) and she was bed bound in hospital for almost seven months. She returned home from hospital in mid-June of 2024." Despite the difficult road ahead, Layla's determination meant she was able to recover. "She would have to build up her strength, to eat, to walk and get back to daily activities. But Layla is an extremely strong, positive and driven girl and so she focused on her physiotherapy and regular hospital visits. She did everything that was asked of her, ticking each one off in order to get closer to the finish line. Layla had some difficult obstacles to overcome, and she did." In January of this year, doctors were planning to reduce Layla's hospital visits as they were happy with her progress and she had received a number of clear scans. Sadly, a scan in January showed Layla had another tumour, which was very aggressive. It is in the same location but has travelled up further behind Layla's diaphragm and Inferior Vena cava, according to her parents. Layla's medical team in Ireland, in conjunction with an Oncology team from St. Jude’s Cancer Research Hospital in Memphis, decided that Layla would undergo immunotherapy. "She began immunotherapy but unfortunately her body rejected it after two rounds of treatment. Once again Layla became very sick. As a result of this, doctors have decided that Layla needs a very complex surgery, which can only be done by a select group of surgeons in the Netherlands," her parents explained. The surgeons have agreed to take Layla as a patient and attempt this extremely tricky but lifesaving surgery. "They will need to remove an extensive area around the tumour site. This unfortunately includes removing part of the Vena cava and reconstructing it afterwards. This surgery has never been performed on a child before but they are confident in taking the operation on." Despite the gruelling medical treatments and numerous surgeries Layla has had to endure, she continues to have a smile on her face, her parents added. "She is a most incredible, determined, thoughtful, courageous, smart and strong person. She is powerful and she has never complained. "Layla is always looking forward. She is looking forward to spending time with her friends again, getting back to school and to sport, as all 12-year-old children should be. We are extremely proud of Layla." A Go Fund Me to raise money for Layla’s treatments and medications has now been launched, and the family are already blown away by the support. "[We] truly appreciate your prayers and good wishes for Layla’s successful surgery and recovery." You can donate to Layla's fundraiser here.