Miriam's Story
Thanks for taking the time to visit my JustGiving page.
As some of you know, our cherished little girl, our beautiful Lizzy B lost her life on July 5th 2013, 2 days after her 2nd birthday to Neuroblastoma, the wretched cancer she had fought for 6 months.
Lizzy had an incredibly rare strain of a very rare and aggressive childhood cancer. She was diagnosed with stage 4 high risk Neuroblastoma in January last year. This affects around 25% of the 100 children a year who get this disease. She was, staggeringly, 1 of only 15 children in the UK being treated at this level. Sadly, current treatments can be ineffective if a child's tumours have an amplification of the MYC-N gene. After responding incredibly well to her first 10 rounds of chemo, Lizzy completely stopped responding to any UK treatments available and the disease raged through her little body, taking control in a matter of weeks. THIS IS SEEN IN ONLY 1 OR 2 CHILDREN A YEAR IN THE ENTIRE UK. She lived only 3 weeks after we were told the cancer was deemed no longer curable.
In the weeks to follow, a new diagnosis was heard. Lizzy had ULTRA HIGH RISK NEUROBLASTOMA. This refers to a child that does not survive beyond the 1st 6 months. Sadly this diagnosis cannot be applied until after death, beacause doctors can't predict how each child's tumours will behave.
At the moment there are many efforts being made in clinical studies to find treatments to control the gene that causes this, none yet successful.
Funds are desperately needed to progress research to the point where other little angels, like our baby, don't have to suffer and die at the hands of what is otherwise a rampant disease. On average 50% of children survive at least 5 years or more..... and 50% dont.
In April 2014, I will be taking on the biggest challenge of my 40 years in this world, second to seeing and living with what happened to my child. I am currently training to run the Brighton & London Marathons 7 days apart to raise funds for The Neuroblastoma Society, who's money goes exclusively to UK research.
Over the next 3 months I am aiming to raise a further £3,000 on top of the staggering amount already contributed to our cause by so many wonderful people! Without private funding, research into this cruel disease is nowhere near adequate, therefore treatments are nowhere near adequate & nowhere near humane.
All sponsorship is so very very gratefully received & is the only way for us to see REAL CHANGE for families who may be facing the same ordeal. No family, let alone child should ever face Neuroblastoma.
We have the power to create change and move forward in the treatment & understanding of Neuroblastoma. That we do have... Never settle.
With love and huge thanks from the very bottom of our hearts,
Miriam, Alex, George & Angel Lizzy xxx
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