Freya Wilson

Freya was diagnosed with a DNET brain tumour age 11, and her journey to recovery took multiple surgeries and is still ongoing. She’s channelled her energy into fundraising for Royal Manchester Children’s Hospital to say thank you for stopping her seizures and putting her on the path to recovery.

Freya experienced her first seizure in May 2020 when she was just 11 years old. Sam, Freya’s mum, heard a commotion from her bedroom and discovered she was having a major seizure on her bed.

Paramedics rushed Freya to her local hospital, where a CT scan revealed an abnormality on her brain, although doctors could not immediately identify what it was. After Freya suffered another seizure in hospital that night, she was transferred the following morning to Royal Manchester Children’s Hospital (RMCH).

Within hours, she underwent an MRI scan which revealed she had a lesion on her brain, though doctors couldn’t yet be sure exactly what it was without further examination. Freya was started on seizure medication and remained in hospital for several days before returning home.

Freya had to try a couple of different medications to effectively control the seizures, which was a scary time of uncertainty for her and her family.

Freya’s Diagnosis

Further tests in August of that year revealed that Freya was suffering from a DNET (Dysembryoplastic neuroepithelial tumour) – a rare, benign, slow-growing tumour that is most common in children and young adults. From this point on, she knew she needed surgery.

That October, Freya returned to RMCH for her surgery. She was terrified, her parents having to physically carry her into the hospital. Through medication and help from her family, she was able to go through with the operation. While the operation was largely successful, the surgeons had to leave a small part of the tumour that they were unable to operate on.

Freya remained on medication for around 18 months after her surgery and experienced no seizures during that time. Eventually, doctors gradually withdrew her medication, and for approximately a year she remained seizure-free. Then, in June 2023, the seizures returned.

Freya underwent another series of investigations and appointments. By April 2024, doctors concluded that further surgery was needed to completely remove the tumour. By this point, Freya was 14 years old, three years after her seizures first began.

The second surgery was tough on Freya, with delays in the lead up leaving her mentally drained before it had taken place. She found solace in football training, which had always been a big part of her life. Even though she experienced small seizures while playing, she was determined to keep it up.

Freya Starts Fundraising

Freya’s first fundraising challenge took place during this time. She wanted something to keep her going before her surgery, something to focus on especially as she was going to be away from her beloved football for months.

To her the reasons for choosing the hospital to fundraise for were self-explanatory, and she chose the challenge because it’s something she knew she would be able to complete even though it was a huge challenge.

Freya ran 100k in 30 days throughout September 2024. She would take on 5ks and 10ks on a daily basis, on top of football training three times a week. Freya raised over £3,400 for RMCH with this challenge.

It was also during this time period that she met Clinical Practitioner Emma Lawson. After one of Freya’s surgeries was cancelled, Emma was there to offer her support and reassure her everything was going to be ok. Freya said: “She really helped me through. She stayed by my side.”

When the day of Freya’s second surgery finally in January 2025 arrived, Freya once again found herself incredibly afraid to go through with it. She refused to move from a chair in the waiting room, and multiple members of the clinical team spent time helping her feel safe enough to continue. Emma was there again to help her through and convince her it was the right thing to do. Freya recalled how she felt having Emma there with her: “I can do anything for Emma.” She also had the support of Dr Stewart Rust, who had been with her on her journey from the start, and paediatric surgeon John Kitchen who performed the surgery itself.

The operation successfully removed the remaining tumour. Surgeons also removed the hippocampus and most of the amygdala in the affected area. Freya found the recovery from this second operation much harder than the first, especially mentally.

After leaving hospital, Freya struggled significantly with her mood. Despite longing to leave before surgery, she became upset at the thought of leaving the people who had supported her through it, particularly Emma.

The location of the surgery helped explain some of these difficulties. The areas removed were involved in memory and emotional processing, and clinicians warned Freya and family that emotional challenges might follow.

Freya’s Ball

It’s at this point that Freya and Sam turned to fundraising to help keep her focussed on something positive.

Freya decided that she wanted to host a ball to fundraise for the hospital that had managed to remove her tumours and stop her seizures.

Freya said: “I was in the living room and I was crying my eyes out because I was upset from the hospital. I was literally like this every day. Then you [Sam] said we’ll start focusing on planning the ball to try and take your mind away from it. I love planning things, so it was something that I love to do.”

This was 12 months before the ball took place, and they took on all of the planning by themselves.

12 months before the ball was due to take place, they got in touch with our fundraiser Georgia who was able to send them over a lot of details to be able get them started.

Georgia said: “Planning a ball takes so much time and Freya and Sam did the perfect thing, they gave themselves enough time. We always say you need 12 months to plan this sort of thing, especially when you’ve not done it before as well.”

Sam and Freya had never planned a ball before, but they went all out. They put on a Valentine’s Day ball that included singing waiters, a live band, a raffle, drinks packages – the works!

They went all out for auction prizes with signed football shirts from Harry Maguire and Michael Carrick and Hilton Hotels holiday where you could choose your destination. There was playing Paddel with Jason Manford and a Coronation Street script. There was even a guitar from Liam Gallagher!

Freya said: “We wanted to make it a good day, and that’s still what everyone says about it now. They’ve all said they’d come again if we do another, so that’s even better ‘cause we can get even more people there next time!”

When asked what her favourite part of the experience was, Freya said: “I think all of it! I think one of my favourite parts was the set up on the day, when the band was setting up and we’d gone to the venue and were setting up the tables and all the little sweet boxes we got. We put up all the Charity fliers and the band was practising. I love that, that was just so nice. Because it literally all led up to that moment.”

They ended up getting over 150 people attending their ball at Leigh Sports Village, raising over £12,200! Having never done anything like this before, Freya and family were shocked at being able to raise so much for RMCH.

For Freya, having supported the hospital meant so much. The fundraising from her ball went to our MediCinema appeal to build a fully accessible, 50-seat cinema that supports patients from across Royal Manchester Children’s Hospital and other Oxford Road campus hospitals. With room for wheelchairs, hospital beds, and medical equipment, and supported by dedicated MediCinema nurses and trained volunteers, it offers 260 screenings a year of the latest releases alongside much loved film favourites.

Freya said – “I’d seen on Instagram all the MediCinema posts and it’s amazing to think that I’ve raised so much that’s actually been put to that.”