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Katie's Story

Katie's family visited the Lodge in September 2023.

When Katie was diagnosed on October 7th 2021, our world fell apart!

She had been suffering for a while with headaches and problems with her right hand, after numerous visits to the Dr’s I finally broke down one day at an appointment, this was because she was being sick nearly every morning for a week.

At first we and the Dr put it down to anxiety and teenage angst, especially as we had all been through the Covid pandemic and Katie was sitting her A Levels.

The Dr had got her an emergency appointment at our local hospital, after numerous tests she was sent for an MRI, even then no one was particularly concerned.

We were then given the most devastating results that no parents ever want to hear! She had a Midline Diffuse Glioma with the H3K27M mutation, our world was turned upside.

There is no treatment for this particular tumour as it starts In the Pons (brain stem).
She was given 13 fractions of radiotherapy in December 2021, this did eventually improve symptoms for a while, but over the next six months they came back with vengeance.

Katie has lost all movement In her right hand side, so is wheelchair dependent.
She has been on high dose steroids since her diagnosis and her appearance has changed dramatically due to this, how hard for a nearly 18 year old to see herself go from a size 6 to a size 22.. all down to medication that is keeping her alive!

She has also had many other complications due to her medication, fractures all down her spine, she also broke her shoulder due to just lifting something not particularly heavy up, so at times has been in immense pain.
However throughout all of this she managed to sit her A-levels, having someone scribe for her and got straight A’s!

In June 2022 just days after her 18th birthday she was given 2-3months to live!

Our daughter has such strength and positivity and according to her consultants is a medical marvel.

In July this year she was once again admitted to hospital. We were told she had 24-48 hours! Katie was subsequently diagnosed with necrotising fasciitis, but she did it again and after surgery she pulled through, our hero and warrior.

She also has medication induced diabetes.. I could go on with all of her many medical complications.

She is an absolute superstar and determined to prove the medical profession wrong.

After a 6-9 month prognosis she is still trying her hardest to enjoy every minute of every day. Now nearly 2 years on she has declined over the last few weeks but is still determined to enjoy her stay in the Cotswolds courtesy of Bens Foundation, thank you all for allowing us to spend some quality time altogether.
Katie, Paul, Shelley and Aimee. X

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