A 15-year-old has been told she may have as little as five years to live after being diagnosed with an incurable form of cancer.
Ayla Halewood, described as a "very tenacious character", was found to have a rare bone cancer in her right knee in June and immediately underwent intensive chemotherapy.
But the treatment was deemed unsuccessful and in September she had most of the leg amputated in the hope of ridding her body of the disease for good.
Two months on the cancer was also discovered on her lungs and classed as terminal, with doctors giving the teenager as little as five years to live.
"We are now trying to live every moment as if it's our last," said her stepmother Sarah Hilary-Jones, from Pontardawe, near Swansea.
"Her behaviour throughout all of this has been incredibly inspirational to me and the rest of the family. She has faced each step of this journey with such grace and fortitude."
Sarah said Ayla started complaining about pain in her right knee in April which the family initially put down to growing pains.
"We took her for a 5km cycle ride and just encouraged her to try and get over it," she recalled. "But when we got back her knee had ballooned up and she was in agony."
Following a consultation with their GP via Zoom, Ayla was referred to Morriston Hospital in Swansea for a scan before being transferred to the Noah's Ark Children's Hospital for Wales in Cardiff for specialist care.
It was there that the family were told about the devastating seriousness of Ayla's condition.
"It was like the floor went from beneath our feet. It was so shocking that you can't really believe or digest what you're being told," Sarah added.
"Everyone just went silent and didn't know what to say. Ayla had never had anything wrong with her before."
Ayla was diagnosed with osteosarcoma, a bone cancer which affects only 150 people a year, and began chemotherapy in earnest six days later. "It was quite a gruelling regime of five days on, two days off, five days on again," Sarah added.
"She was very sick after the first lot of chemotherapy and she lost so much weight. She was very skinny anyway but she got down to just six stone.
"We were frightened just getting her into the bath as she was so frail, but as time went on she became more resilient to the chemotherapy and it didn't have such a debilitating effect on her."
Ultimately the chemotherapy failed to shrink her tumour and in September she went under the knife for a right leg amputation above the right knee.
"When we found out she was losing her leg we all burst into tears, but Ayla just took it all in her stride. We have been really amazed by her response," said Sarah.
"Her leg had become this heavy weight she'd been dragging around. It had become very awkward and painful to walk on.
"After the amputation she was immediately getting up and about which surprised the doctors. She was doing her exercises and within a day she could balance."
Following the operation Ayla, who lives with Sarah, her biological mum Anais Hall, and siblings Luca, 18, Branwen, 16, and Tali, 10, continued to receive chemotherapy, but in late November doctors confirmed the cancer had spread and formed three cancerous nodules on her lungs.
"After the leg had come off and the chemotherapy had finished, we were in the mindset that everything would return to normal, she'd go back to school and continue with her GCSEs. When we had this sudden news we knew there would be no normal," Sarah added.
"The doctors said she could have extra chemotherapy but that it won't make much difference. It won't cure her and that she will die from this within five to seven years.
"That was a really hard conversation with the doctor [at the children's hospital] but she was so kind and she spoke to us like a mother would. She said: 'Maybe you should now look at Ayla's quality of life and make sure her last years are as bright and as brilliant as they can be'."
Sarah admitted the terminal cancer diagnosis has inadvertently had a positive impact on Ayla's character.
"Before all of this she would admit that she wasn't very confident, was quite shy, and got embarrassed about things. But now she's raring to go and wants to attack life and enjoy and experience everything she can."
The family has now set up a GoFundMe page in a bid to make Ayla's last few years memorable. They also want her to get a "micro-processor" prosthetic leg which works on all terrains. To donate please go here.
Sarah added: "She loves cooking and wants to get a van and go around the country selling tasty organic treats. She also wants to go scuba diving with sharks. She has her heart set on travelling the world exploring and meeting people – everything a teenager should do."
Due to the current coronavirus restrictions in Wales, which Sarah described as a "cruel joke", Ayla has to remain at home for the time being. But the family hope things will now turn a corner following the vaccine rollout.
"None of us are in control of our lives or know how long we're going to live so we're trying to make every little moment special," said Sarah. "It has deepened our family unit and made us love each other even more."
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