Ryleigh's Story

Ryleigh was diagnosed with ependymoma brain tumour in July 2018 at just 2 yrs old.

Her first surgery was 20 hrs long and she went straight to icu to recover for a few days, she then had a further surgery in August as they could still see a spot left behind itWas crucial all of the tumour was removed before starting radiotherapy.

She also developed hydrocephalus in which she had an external drain put in for while she was doing radiotherapy.

After 6 weeks of radiation her treatment plan was finished. She overcome the hydrocephalus and the drain was taken away. Sadly It had regrown the smallest amount.

She was accepted for a trial which meant chemotherapy we had Christmas with us as a family and had surgery again just before new year, incredibly got the all clear in may 2019 and rang the bell.

Ryleigh remained stable until March 2021
Another surgery and 6 weeks of radiation. She continued to go nursery everyday after radiotherapy too. What a trooper!

In August 2021 she was again given the all clear and she carried on her life like a “normal” child, attending school thriving, and making lots of friends.

Sadly January 2023 she relapsed. This time wasn’t good news she would be palliative as no surgeon was happy to go back in and remove the tumour as it’s was so complicated and could cause her a lot more complications.

As they said quality over quantity was in her best interests at this point. We made as many fun memories as we possibly could throughout 2023. One was that she met queen consort Camilla.

Sadly she passed away 24th January 2024

Going to bens retreat is a perfect opportunity for myself, my son, my mum and step dad to reflect on this year and to get away for a short time.

It will be the first time we’ve been away without Ryleigh as we always went as the 5 of us over the years