Freya is just the sweetest, funniest, caring little girl, not to mention brave and fearless! She has a cheeky sense of humour and is a complete joy to be around. She always makes sure that everyone around her is okay and is always on hand with a cuddle if not! Freya and her identical twin Alice are inseparable and love spending as much time with each other as possible when Freya is not in hospital.

In December 2022, after months of uncertainty, Freya was diagnosed with stage 4 high-risk neuroblastoma, a rare and aggressive childhood cancer that has a 40-50% chance of long-term survival at diagnosis. After enduring 15 months of frontline treatment, sadly end of treatment scans in March 2024 revealed that Freya had relapsed with new areas of disease showing.

Her parents, Shaun and Debbie, are fundraising for potentially life-saving treatment for Freya to get her back into remission. As Freya has relapsed, her treatment options are more limited. Treatment not available through the NHS can cost hundreds of thousands of pounds.

Freya's story

Back in May 2022 Debbie noticed that Freya was constipated and had a slight bulge in her tummy. At their local walk-in centre, Freya was seen by a nurse who couldn't feel anything untoward and mentioned that it was possibly an umbilical hernia. Debbie wasn’t completely satisfied with this answer but accepted what she was told and tried to put it to the back of her mind. By November, with the bulge still visible, Debbie made an appointment with a GP for two weeks’ time. The following week Freya woke up with a slightly swollen eye and the morning after could barely open her eye. The family went straight to the walk-in centre and were referred immediately to their local hospital.

During their stay at Queens Hospital Burton, doctors told Debbie and Shaun the devastating news that the lump in Freya's tummy was likely to be neuroblastoma. 24 hours later the family were transferred to Birmingham Children's Hospital where Freya had several tests which confirmed she had stage 4 high-risk neuroblastoma. By the time Freya was diagnosed, the disease had spread to her collarbone, hips, and pelvis

Treatment so far

Freya has already been through so much since her diagnosis in December 2022. She has had numerous blood and platelet transfusions, daily G-CSF injections, bone marrow aspirates and trephines, and has been fed through an NG tube and countless x-rays, MRI and MIBG scans. Side effects of this aggressive treatment have included vomiting, diarrhoea, nerve and joint pain, loss of high-frequency hearing and tiring easily which means she finds it hard to walk any distance and is reliant on using a wheelchair when out and about.

The chemotherapy Freya received at the start of treatment, as well as resulting in her losing her lovely blonde hair which means she is often mistaken as a boy, puts her at a higher risk of getting secondary cancers in the future.

Freya had major surgery to remove the main tumour which was delayed twice due to a chest infection. During surgery, a sample of her ovarian tissue was taken to be frozen, which hopefully can be used in the future should she wish to have children. Treatment-related decisions like this have been incredibly hard for her parents to make, especially knowing the extreme side effects of treatment on Freya’s little body.

During Freya’s stem cell transplant, the family spent 7 weeks apart. Both parents had to take time off work to be able to 'do shifts' at the hospital so that both Freya and Alice got to spend time with each parent. This period of treatment was hard for the family as they were not together to support each other through it, especially when Freya developed severe veno-occlusive disease (VOD), a potentially life-threatening complication common during this stage of treatment.

Relapse

After 15 months, Freya completed frontline treatment in March 2024 but devastatingly end of treatment scans showed new lesions on the opposite side to where her primary tumour was found at diagnosis. A biopsy of the lesions subsequently confirmed that the new disease is neuroblastoma. In May, Freya started BIT chemotherapy and will have scans periodically to assess if the treatment is working.

Freya’s treatment has had a huge impact on the entire family but especially on her twin sister Alice who is able to do so much that Freya can’t but often chooses not to because she wants to support her sister and doesn’t want her to feel like she’s missing out.

Freya has missed out on so much school and socialising with friends and now faces further isolation as she restarts treatment again. Prior to diagnosis Freya used to enjoy taking part in some of the after-school clubs on offer such as Karate but has not been able to attend since beginning treatment due to the increased risks associated with having a central line, the treatment she has received and simply not having the energy to participate fully following a full day at school.

Solving Kids' Cancer UK's children's fundraising campaigns

Funds raised will go towards helping Freya and her family. If Freya no longer needs the funds or is in remission five years post the end of successful treatment, the funds will be used to support other children and families affected by neuroblastoma through our activities. For children with relapsed high-risk neuroblastoma, like Freya, the survival rate is much lower than other childhood cancers.