Ivy Hemingway - Brain tumour journey

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Benj Hemingway and 4 others are organizing this fundraiser.

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Hello everyone!

In September 2021 our daughter Ivy (4 at the time) was diagnosed with a rare and dangerous brain tumour known as a Craniopharyngioma. The wonderful team at Sheffield Children’s Hospital saved her life through 3 rounds of emergency surgery before a final craniotomy (partial skull removal) was performed on Jan 5th 2022 to remove the whole tumour.

I'd like to say the nightmare for Ivy and our family ended there but unfortunately, Ivy was left with a severe brain injury and therefore has a series of problems that will now affect her for the rest of her life. These include:

Hormonal dysfunction - None of her hormones work anymore.
Hypothalamic obesity - Due to her brain damage, Ivy's energy regulator and normal desire for food, have been damaged beyond repair resulting in her body weight doubling.
Sleep malfunction - Ivy no longer sleeps through the night and can often remain awake for the whole night.
Behavioural extremes - When Ivy gets tired, she becomes angry and often aggressive.

Ivy (now 6) has regular MRI scans to determine whether or not her tumour is regrowing. The results of her January scan show that her tumour has grown back and she will therefore require further treatment at the Christie Centre in Manchester where she will receive specialist proton beam therapy.

Ivy's journey and the changes that she has gone through have caused her immense trauma. It has also taken a huge toll on all of us as a family, from the initial diagnosis, the various surgeries, the personality alterations and the severe weight gain that she has experienced.

Please join me and my wife Sarah (Ivy’s mum) in raising funds for Sheffield Children's Hospital who saved Ivy's life and The Brains Trust who have supported us so much on this journey. I will be running a Beast Spartan race on August 13th together with 3 of my closest friends to focus the fund raising for my precious little girl and the above supporting charities.

From the bottom of my broken heart... Thank you!

Benj Hemingway (Ivy's Dad)