A SOUTHAMPTON family who say they felt "forced" to spend thousands on private treatment for their terminally ill daughter have called for more funding from the government to research her disease.

Eleven-year-old Brooke Leavey died on March 14, 2020 after she was diagnosed with brain cancer just 11 months before. 

Having developed a droop on the side of her face, she was told she had an "aggressive and inoperable" difuse midline-glioma (DIPG).

After six weeks of radiotherapy under the NHS, desperate parents Dan and Lisa searched for clinical trials and felt “forced into conversations with private consultants” which carried with it a high cost.

Daily Echo: Sister Amelia, dad Dan and Brooke Leavey.Sister Amelia, dad Dan and Brooke Leavey. (Image: Brain Tumour Research)

A fundraiser was started with the family raising £200,000 for treatment in the USA.

Despite this, Brooke began to succumb to the disease. 

Now, more than two years on, to mark DIPG Awareness Day her father, Dan is campaigning alongside charity Brain Tumour Research to call on the government to increase research funding. 

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He said: "As a family, we believe everything we did helped Brooke.

"She was a proper fighter and everything we went through was a battle. I can’t fault the compassion and support from the NHS staff.

"However I am angry. Angry that decades have passed and still people are dying from this disease, and yet treatment options for brain tumours aren’t keeping up to date with innovations in other cancers.

"The Government must recognise brain tumour research as a critical priority.

"This increase in research investment would put it in line with the spend on cancers of breast, bowel and lung, as well as leukaemia.”

The Leavey family even gained the support of Hollywood legend Whoopi Goldberg in their struggle to find treatment. 

Daily Echo: Brooke Leavey with her family and Whoopie Goldberg.Brooke Leavey with her family and Whoopie Goldberg. (Image: Brain Tumour Research)

The family met the Sister Act star in a New York toy store with Whoopi being "moved" by Brooke’s story.

A petition has been set up with the aim of getting 100,000 signatures.

The charity is calling on the Government to ring-fence £110 million of current and new funding to kick-start an increase in the national investment in brain tumour research to £35 million a year by 2028.

Brain tumours kill more children and adults under the age of 40 than any other cancer, but just 1 per cent of the national spend on cancer research has been allocated to brain tumours since 2002.

Daily Echo: Amelia and Brooke with their soft toys gifted by Whoopi GoldbergAmelia and Brooke with their soft toys gifted by Whoopi Goldberg (Image: Brain Tumour Research)

Mel Tiley, community development manager at Brain Tumour Research, said: “We are grateful to Dan for supporting our petition and helping to raise awareness.

“For too long governments have put brain tumours on the ‘too difficult to think about’ pile.

“If everyone can spare just a few minutes to sign and share, we will soon hit the 100,000 signatures we need and help find a cure, bringing hope to families whose loved ones have been affected by brain tumours."

The petition which closes at the end of October can be found here.