When Freya was just over a year old, her mum Sherrie received the news that would change their lives: Freya has Neurofibromatosis Type 1 (NF1) – a rare genetic condition that affects the nerves, causing tumours to develop in the body and often bringing developmental and behavioural challenges. As Freya grew, she was also diagnosed with high functioning ADHD, autism and other learning and developmental differences, all of which shaped how she experienced the world.
Looking back, the signs had been there early on. At just four months old, Freya reacted strongly to loud noises, covering her ears and rocking in her bouncer. She climbed furniture like a “little koala bear,” and she didn’t walk or talk until she was around two.
“She’s always been a whirlwind,” Sherrie says with a smile.
But when a lump appeared on the top of Freya’s head, Sherrie’s instincts told her something wasn’t right. Doctors initially thought it was related to NF1, but the lump kept growing. After pushing for answers, Sherrie took Freya to A&E, where an MRI was finally arranged. The results came during a routine eye appointment: Freya had optic pathway gliomas – tumours on the nerves behind her eyes.
Sherrie’s world fell apart. As a single mum to Freya and her older daughter Ellie, she suddenly found herself navigating a frightening new reality. And she was doing it while working seven days a week as a carer, juggling her day job with the constant demands of caring for Freya at home. The load was immense, but she kept going.
For a year, the tumours were closely monitored, but just before Christmas 2024, Sherrie was told that Freya would need to start chemotherapy straight after the holidays. The tumours were pressing on the point where the optic nerves cross, meaning Freya was losing vision in both eyes.
On 7 January 2025, at not even four years old, Freya began a gruelling 70‑week chemotherapy programme.
A year of treatment, and a child who never stopped shining
Chemo brought long hospital stays, emergency admissions, high temperatures, pain and exhaustion. Freya developed neuropathy – painful tingling and nerve damage – and her mobility began to decline. Today, she uses an ambulatory wheelchair because walking can be painful and tiring.
Despite everything, Freya never stopped being herself. “She was bouncing off the walls,” Sherrie laughs. “Even after chemo, she’d be running around within ten minutes.” Her personality never dimmed.
But treatment came with sacrifices. Freya couldn’t enjoy the sensory play she loved – water, mud, messy play, because she couldn’t get wet or dirty. “She hasn’t had the most amazing childhood for the last couple of years,” Sherrie says. “But now treatment’s over, I want to give her the best childhood I can.”
In early 2026, Freya rang the bell – a milestone that signalled the end of her chemotherapy journey and a positive step forward. The tumours are still there, and she’ll need MRIs and eye checks every few months for at least ten years. But for now, they are stable. And for Sherrie, that’s enough.
Life with complex needs
Freya is nearly five now, but cognitively she’s closer to two. She needs help with dressing, toileting, communication and daily routines. At school she has one‑to‑one support, struggles with sensory overwhelm, and finds changes in routine extremely difficult – her world can be confusing and unpredictable.
Despite this, she is bright, funny and wonderfully perceptive.
“She’s a force to be reckoned with,” Sherrie said.
Having a big sister
Freya’s older sister Ellie, nearly 15, has been by her side through everything. The girls are inseparable, often having sleepovers – Sherrie describes them as “two peas in a pod”.
But Ellie carries a lot. She understands the seriousness of Freya’s condition, and that awareness has brought anxiety and responsibility far beyond her years. She wants to attend appointments, hear updates from doctors, and be involved, but it’s a heavy emotional load for a teenager.
Jessie May’s support has given Sherrie precious time with Ellie, which is something she rarely gets as a single parent caring for a child with complex needs.
Jessie May’s Support
Jessie May came into their lives shortly after Freya started chemotherapy. Nurse Vic was their first visitor, and she quickly became a trusted presence for both Sherrie and Freya.
Over time, different Jessie May nurses have supported the family – playing with Freya, taking her out, doing crafts, cooking, even helping with housework when things were overwhelming. Freya adores them. “My big friends are coming!” she shouts with excitement when she knows they are coming to visit.
For Sherrie, those three hours a month have been transformative.
“It is a godsend,” she says. “I can get shopping done, do a tip run, or just take a moment to myself. I don’t trust many people with my kids, especially not Freya, because things can change so quickly. But I trust Jessie May completely.”
Jessie May events, like the Christmas party and the ice‑skating session, have been really meaningful for the whole family as well, giving them rare opportunities to take part in something together.
Sherrie said, “Freya lit up whizzing around the ice rink in her wheelchair with Santa, and it gave me some rare time with Ellie as well.”
What Sherrie wants people to know
NF1 is still widely misunderstood. Support is limited. Families often feel alone.
Sherrie hopes sharing Freya’s story will raise awareness – not just of NF1, but of the resilience of children like Freya and the families who care for them.
Despite everything, she feels grateful. “We’ve met children who are so much more poorly,” she says. “It’s humbling. We’re lucky in many ways.”
Her hopes for her daughters are simple:
For Ellie – to thrive, to chase her dreams, to build a future she loves. For Freya – to be happy and healthy, whatever that looks like for her.
“I’ll move heaven and earth for these kids,” Sherrie says. “I can’t always do it, but I try.”
For more information about our oncology support, visit – Oncology Care Service – Jessie May.
