Liberty's Story

Just before Christmas 2021 Liberty who was 13 at the time noticed, her balance wasn’t quite right, she kept tripping over, she also felt that her left eye was turning inwards.

We went to the opticians, who said her eyes were just tired, and to get more rest. A few days later, Liberty was making a tiktok with her younger brother Lawson (7) and older sister Arabella (15), when she became really dizzy and fell to the floor.

We visited our GP who said she needed to see an Ear Nose and Throat Consultant but due to Covid there was a two year waiting list. We knew something wasn’t right and went privately, we managed to see the ENT Consultant for an MRI on Friday 21st January 2022. I received a phone call from the consultant at 1pm on that Sunday saying the MRI had shown a lump in the centre of Liberty’s brain.

An appointment was arranged the following day at Birmingham Children’s Hospital, where it was confirmed that Liberty had an inoperable grade IV Diffuse Midline Glioma. Our whole world fell apart that day, our healthy fun loving, sports mad daughter then went into hospital on 26th January 2022 for a biopsy to confirm their findings. Liberty had no other symptoms at this point. It was so hard to believe anything could be wrong.

At the beginning of February 2022, Liberty started a 6 week course of Radiotherapy at the QE Hospital in Birmingham. Although the therapy made her really poorly with sickness, loss of appetite and losing her beautiful long blonde hair, she stayed strong and battled through, determined to get back to her old self.
The radiotherapy stopped the tumour in its tracks and we were able to spend the Summer of 2022 and the rest of the year taking time as a family to do everything we possibly could to make as many magical memories as possible. Liberty even managed to go back to school and started to feel like a normal teenager again.

Sadly, just before Christmas 2022 Liberty started to notice her dizziness coming back and her left eye became worse causing constant double vision, headaches and tiredness, and the right side of her body became very weak.
We were initially told Liberty would only be allowed 1 course of Radiotherapy, but in February 2023 Liberty’s consultant said that she could have another 3 week top up course. We were all really happy, Liberty dealt with the Radiotherapy much better this time, even losing her beautiful hair for the 2nd time, until the very last session where she became very ill and needed steroids. Sadly, her symptoms haven’t improved this time, the Radiotherapy hasn’t worked and the cancer has spread throughout her brain. We were told that no more treatment was available for Liberty and we started talking about clinical trials but with none available, Liberty made the decision to spend the time that she has left doing all the things she loves doing with her family and friends. Liberty’s symptoms are sadly becoming progressively worse and we are now receiving palliative care at home.
So being able to spend time together is perfect, and we are so grateful for this break away. Arabella is taking her GCSE’s at the moment so it’s all very stressful for us all, so just to be able to get away and spend some quality time with us all together will be fantastic, thank you so much for this opportunity, you really are amazing!