Orla, two, must go abroad for help ...it’s not a priority here
LITTLE Orla Tuckwell may have to be treated abroad because research into brain tumours is not a “critical priority” in Britain.
This cancer kills more children than any other but little cash goes on finding cures.
After ex-Labour MP Tessa Jowell died of the disease in 2018 some £40million for research was promised but just £15million has been spent, say charities. Since then more than 25,000 have died because of a brain tumour.
Orla’s mum Naomi, who is crowdfunding for life-saving treatment, said: “It’s far too much for a two-year-old to cope with. It’s shocking how little is known about this disease.
“Hopefully, we won’t need the money we raise and it can be donated to help further research for future patients.”
The All-Party Parliamentary Group on Brain Tumours will today demand reform. It claimed patients are still let down, despite promises. Historically, just one per cent of cancer research funding goes on the brain disease.
Orla was diagnosed with medulloblastoma, the most common childhood high-grade brain cancer in September. Three operations at Great Ormond Street Hospital and high-dose chemo mean she has no immune system.
Naomi and her IT specialist husband Adam, 40, who also have Ava, eight, and six-year-old Poppy, have raised £30,000 to fund treatment, privately or abroad, should her current therapy not go to plan.
Former teaching assistant Naomi, 37, from Broxbourne, Herts, said doctors found a tumour mutation “so rare specialists cannot find another case anywhere in Europe”.
She said: “Our whole world came crashing down around us.” Naomi called medics “amazing”, but added: “This shows why we need investment in research.” The MPs’ probe shows how terminally ill children have been denied last-resort clinical trials, while potential new treatments have failed to reach sufferers because of funding red tape.
Sue Farrington Smith, of the Brain Tumour Research charity, said: “Patients and families continue to be let down by a funding system that is built in silos and not fit for purpose.”
Since the £40million investment pledge after Baroness Jowell’s death, five-year survival rates languish at 12 per cent.
Her daughter Jess Mills co-founded the Tessa Jowell Brain Cancer Mission to improve brain tumour care as her mum was dying.
She said the MPs’ report shows “the potential of the picture of the future, where, as my mum dreamed, the very best and latest science will be available to all”.