Billie The Brave: 'I knew something was wrong with my little girl but we never expected leukaemia'

The parents of a young Sheffield girl who lost her voice due to leukaemia have described the moment they learned she had the disease.

Billie Turner was diagnosed in November 2022 with acute lymphoblastic leukaemia (ALL).

Since then, the three-year-old, dubbed Billie The Brave for the remarkable courage she has shown, has had five rounds of chemotherapy, immunotherapy treatment and steroids.

One round of chemotherapy paralysed her vocal cords and left her with an airway the size of the inside of a biro pen. Billie was struggling to breathe and so she needed a tracheostomy. This had a huge impact on her ability to talk so her family, including six-year-old sister Ada, learnt Makaton, a form of sign language which supports the spoken word, to communicate.

When the tracheostomy is removed, which should be next year, Billie will get her voice back and with the help of speech and language therapists, she will learn to talk.

Taken to A&E with vomiting and breathing problems

In 2022, mum Freyja and dad Zac took Billie to A&E three times with vomiting, a respiratory infection and breathing problems before she was diagnosed that November.

On the final trip, doctors put her on oxygen and carried out several tests and scans. She was transferred to the Oncology Ward at Sheffield Children’s Hospital before the family were told that she had ALL.

Freyja, aged 29, from Charnock, said: “I knew deep down something was wrong with her, but we never expected leukaemia. It felt like the world was about to end. We have been in and out of hospital for almost 18 months now – all this treatment, including a period of intensive care, feels relentless.

“The chemotherapy is so harsh on little kids’ bodies. Whilst Billie can eat and drink normally, the tracheostomy means that she can’t speak – which is the hardest thing to come to terms with. The treatment took away her voice when she was just starting to learn to use it. But we’ve all learnt Makaton so we can communicate that way instead. We watched lots of YouTube videos and Billie watches Mr Tumble on CBeebies, who uses Makaton.”

Freyja, who worked as a research facilitator for the NHS, took a career break to care for Billie, while the youngster’s dad Zac, 29, who is a self-employed joiner, has also had to take significant amounts of time off.

Parents had to cancel wedding

The couple had to cancel their wedding, which was scheduled for September 2023. They hope to have a combined wedding and celebration for Billie finishing her maintenance treatment and having her tracheostomy removed at the end of 2025.

Friends and family rallied round, including Freyja’s childhood best friend, Hannah Smith, 23, who is running the London Marathon on Sunday, April 21 for Leukaemia UK.

This will help to raise funds to research to kinder, more effective treatments for children like Billie who are diagnosed with leukaemia. Leukaemia is the most common type of childhood cancer, accounting for around a third of all cancers in those under 15 years old. 

Hannah said: “I remember the evening when I was told Billie had ALL so clearly. I thought to myself how can this be real? However, I just knew I had to be strong and do whatever I could to help keep their routine as normal as possible.

Billie’s fighting spirit has been ‘inspirational’

“Throughout Billie’s treatment, I have picked Ada up from school, taken her to do fun activities, hosted sleepovers, and gone on many play dates.

“Billie’s superhuman fighting spirit has been inspirational. Though it’s been heartbreaking seeing Freyja and Zac experience what no family should ever have to go through, they really are a true inspiration to everyone around them and have shown amazing strength. I am so proud to be running the London Marathon for Leukaemia UK so I can play my small part in helping find kinder treatments for this awful disease.”

Hannah, who is one of 50 runners taking part in the London Marathon for Leukaemia UK this year, has already exceeded her £2,000 target. 

Hanna Chorley, community and challenge events manager at Leukaemia UK, said: “Billie has inspired so many people, including the team here at Leukaemia UK.

“Leukaemia is the most common childhood cancer, and ALL is the most common type of leukaemia amongst children, making up around 80 per cent of cases.

“Whilst nine out of 10 children survive, the treatments are harsh and have remained largely unchanged since the 1960s. We hope to raise almost £100k in this year’s London Marathon to go towards researching treatments that are better and kinder, and don’t take such a huge physical and emotional toll on both those who are diagnosed and those who care for them.”

To donate, visit: https://www.justgiving.com/fundraising/hannah-smith200.