The parents of a Welsh girl who died at just 17-years-old are hoping to raise awareness after she was thought to have fallen ill with tonsillitis following her first parent-free holiday.
Leah Rogers, from Briton Ferry, Neath Port Talbot, Wales, had planned to go on holiday with her older sister and a group of friends to Palma Nova in May 2022, after previously visiting the popular tourist spot with her family.
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As the trip got closer, Leah's older sister had to back out, leaving her parents reluctant to let her go alone. However, though she was only 17, her parents decided she'd be sensible enough to go on the trip with some of the older friends who were attending.
All went well while Leah was away, but just a couple of days after she got back, Leah fell ill with what appeared to be a case of tonsillitis - something she often came down with.
She was prescribed antibiotics, but was taken to hospital twice in the following week as her symptoms continued to get worse.
Days passed with Leah not seeing any improvements, and after being prescribed a different course of antibiotics she went back to the hospital and met with a consultant.
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"We thought we'd finally see an improvement so we felt a bit more at ease. But by the Tuesday she was getting pain in her abdomen," Kath said.
"When the doctors came to see her straightaway they said she had glandular fever."
Leah was admitted to hospital and underwent blood tests for the pain near her liver. The next day, her parents were told she had liver failure.
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"From there then it escalated," Kath recalled. "They said she needed to go to a specialist centre in Birmingham. They told us she would possibly need a liver transplant and they were trying to get a bed for her in Birmingham."
Leah was taken into intensive care in Princess of Wales Hospital in Bridgend, and after she started to get confused about her surroundings, staff told Leah's family they would put her on life support before being transferred to the Queen Elizabeth Hospital in Birmingham.
"I thought they'd just put her on life support for the journey and then when we got to Birmingham they'd wake her up. But they never woke her up. They then realised it was far more serious than we had anticipated," said Kath.
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Doctors consulted with haematologists, and Leah was officially diagnosed with haemophagocytic lymphohistiocytosis (HLH), a life-threatening immune condition which causes the body to react inappropriately to a ‘trigger’, usually an infection.
"Basically there was no more treatment they could do for her," Kath said. "I organised for somebody to bring my son and daughter up. We didn't know how long she had but we knew it wasn't very long."
After learning there was nothing more the doctors could do, Leah's family made the decision to turn off Leah's life support.
She died on June 7, 2022, just three months before her 18th birthday.
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Kath said that the family was comforted by the knowledge Leah wasn't 'scared or awake' when she was diagnosed with HLH, though she noted that it 'all happened so quickly'.
"You don't ever expect to lose your child. It is the hardest thing ever. I don't know if we'll ever get over it," she said.
The family is now aiming to raise awareness of HLH and find a cure for the condition, with Leah's dad, Hugh, hopeful that Leah's story will inspire others to realise what they have before it's too late.
Last year the family managed to raise more than £20,000 for the charity Histio UK through a fundraiser which also marked Leah's 18th birthday, and on 9 September they're set to put on another event at JK's in Briton Ferry to celebrate Leah's life and raise funds for the charity.
Tickets for the upcoming fundraiser are available at JK's and any donations or payments to the charity can be made via PayPal to [email protected].
Emily Brown