Funding Neuro is delighted to welcome two of our biggest supporters as patrons to the charity after they replied to our invitation earlier this year.
Louis and Anna Brooks of Bures, Suffolk, have already contributed so much to the charity, we wanted to recognise their contribution and know that they will continue to strive to support the work of Funding Neuro.
The Brooks are the parents are the parents of the beautiful Daisy, who very sadly lost her life to DIPG. They were one of the first families in the world to try an innovative new treatment using a revolutionary delivery method called Convection Enhanced Delivery (CED).
Daisy was diagnosed with DIPG (Diffuse Intrinsic Pontine Glioma) in 2014. After a brave battle with the disease, the little girl passed away in 2015, one day after her seventh birthday. Described by her dad as a “brave and caring girl who never complained about anything,” Daisy remains an indomitable pioneer in the fight against child brain stem cancer.
DIPG is a rare brain disorder, mostly affects children, and the average life expectancy after diagnosis is just six to twelve months.
The CED treatment used by Daisy was pioneered by Professor Steven Gill and his team in Bristol. CED requires surgically implanting 3D-printed micro catheters into the brain, which then deliver chemotherapy directly into the tumour.
This experimental surgery gave Daisy a chance to treat DIPG, gain a much improved quality of life and a few more precious months with her family. Sadly, and owing to the current inevitability of the disease, Daisy passed away aged just seven-years-old.
Following Daisy’s passing, the Brooks formed the Do It For Daisy Trust. To date, the organisation has fundraised over £300,000 and helped transform the future for all children with childhood brainstem tumour DIPG. The inspirational Brooks family and their friends and colleagues have raised the money to run a clinical trial that will make Professor Steven Gill’s CED system available for the next generation of children who need it.
The Do It For Daisy continues its great work today. Over the years, the organisation has held innumerable fundraisers,from the Daisy Ball and Dedham Vale Daisy Day to comedy nights, as well as selling Daisy Christmas Cards and Daisy badges. Their friends and family include the team at clothing specialists Sharon Lee Ltd. The company made Funding Neuro their Charity of the Year in 2017 , donating £1 for every invoice they send out.
Tony Pache, Sharon Lee’s managing director, said: “I am thrilled the Louis and Anna Brooks have been made patrons.”
Sharon Kane, Funding Neuro’s CEO, added: “The strength and generosity the Brooks family have always shown during challenging times will forever be and continues to be an inspiration to the staff, supporters and all associated with Funding Neuro and who know Daisy’s story.”