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On 20th April 2018, our world changed forever, when we learned Georgia had DIPG - an aggressive and inoperable brain stem tumour. There is currently no cure for this dreadful disease, and the standard treatment is radiotherapy simply to extend the child's life. You can read more about DIPG here
Over the last 8 weeks, Georgia has undergone 4 MRI's, a brain biopsy and 6 weeks of radiotherapy. At this time, this is all that conventional medicine can do for us.
However, there ARE therapies out there. They're experimental in nature, but we've researched them endlessly and identified the ones that show promise. We feel very strongly that we owe it to our little girl to try them. Her quality of life is forefront of our mind, so we won't put her through endless treatments if she is clearly deteriorating. But right now, she's improving, and has such a will to live and a love of life, that we are determined to try and save her. Without trying these treatments, she has just months to live.
The first, and perhaps most costly procedure, is she is being fitted with a Convection Enhanced Delivery (CED) system. This is a relatively new technique which allows cancer fighting drugs to pass across the 'Blood Brain Barrier', the impenetrable wall that makes treating brain stem cancer so difficult. You can read more about CED here This procedure is not available on the NHS, and is estimated to cost around £60,000.
Once fitted, Georgia can receive transfusions of the chemotherapy drugs that show some promise, as well as using immunotherapy treatments to fight the cancer. These infusions will involve travelling every few weeks to Europe, and are estimated to cost between £6,000 and £20,000 per infusion.
Our total estimated costs are in the region of £200,000 to £300,000. We are draining our savings to fund as much as we can, but still have a shortfall. People have been so kind and generous already but if you can spare anything at all to help Georgia, we would be so incredibly grateful. If you have any questions at all, please feel free to contact us.
Thank you for taking the time to read this - With Love, Gary, Ruth, Georgia and Finley
UPDATE: September 2018:
To everyone who so generously donated to Georgia's fundraising - from the bottom of our hearts, a huge Thank You. We were astounded at people's kindness and generosity and in such a difficult time, it is humbling to witness so many people willing to help.
We raised a significant amount of money, some of which has gone towards Georgia's treatments to date. Very sadly though, Georgia did not respond to radiotherapy, which made her ineligible for many of the therapies. We are devastated to say the least.
There will be a sizeable amount of the funds remaining. We plan to either donate this to brain tumor research, or set up a charitable foundation in Georgia's name to help children with brain tumors access trials and cover the significant financial burden that cancer brings.
Either way, the funds will be used to help other children who face this dreadful disease. You are very welcome to contact us with any questions.
Again, sincerest thank you to everyone who has helped and supported Georgia along this difficult journey.
With love and best wishes,
Ruth and Gary Paul
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Oct 18, 2018
Oct 13, 2018
Oct 11, 2018
Oct 11, 2018
Donation towards Jim and Kim's coffee morning with love from Kim's mum xxx
Oct 4, 2018
Ellen Aubrey (4beauty Ltd)
Oct 2, 2018
Thinking of you Georgia xx
Oct 2, 2018
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