The family of a seven-year-old girl who died of a brain tumour have taken their campaign for investment into finding a cure for the devastating disease to Westminster.
Alison Phelan, a pupil at St Josephs in Belmont, Harrow, died in 2001 - just three weeks before her eighth birthday.
Her parents Julie and Gary, who live in Stanmore, set up Ali’s Dream, along with extended family and friends, to fund research into childhood brain tumours.
To date the charity has raised in excess of £900,000 in its mission to find better treatments and ultimately a cure.
Julie Phelan said: "It makes me angry that there is such a disparity between the numbers of children with brain tumours and the level of funding.
"It is almost 15 years since we lost Ali, yet parents are still faced with no real choice in treatment options that will make a difference.
"Brain tumours kill more children and adults under the age of 40 than any other cancer yet just one per cent of the national spend on cancer research has been allocated to this devastating disease.
"This is unacceptable. At the current rate of spend it will take 100 years to find a cure."
In May 2000, Mrs Phelan became aware that Alison had developed a subtle incomplete movement in her eye - something "only a mother would notice".
For nearly three months, the Phelans took Alison to opticians, doctors and A&E where she had test after test but no one could determine what was wrong.
Mrs Phelan did not give up and eventually Alison had a scan, it showed her daughter had an untreatable brain tumour.
As she got more and more poorly "her boys" - Alison's older brothers Matthew and Graham - were always at her side, playing with her, helping her eat, fetching and carrying and always loving her - "there was always so much love".
Mrs Phelan said: "Just before her eighth birthday on June 7, 2001, in the early hours our lights went out - a bulb never to be replaced, a scar never to heal, a hole never to be filled, our jigsaw - a piece missing never again to be complete."
Alison was among those remembered at a reception held at Speaker’s House, within the Palace of Westminster, by kind permission of patron of Brain Tumour Research, John Bercow MP, Speaker of the House of Commons.
The event on Wednesday, March 9, was held to acknowledge the contribution made by activists across the UK who shared and signed an online petition calling for more investment. With more than 120,000 people signing, the funding issue will be scheduled for a House of Commons debate.
Mrs Phelan said: "When Ali was diagnosed with a brain tumour, on August 15, 2000, our whole world came crashing down, it was followed by ten months of hell on earth.
"Alison showed us, and 'her boys', Matthew and Graham, such a love that was unique and will never leave us, along with so many wonderful memories.
"We are comforted by having had her for nearly eight years and knowing that she was happy and secure.
"She was so cherished, which shone through in the way she giggled with sparkling eyes that lit up her beautiful face.
"Ali is now our very own angel, she has left us now four guided by a shining star.
"Through all our pain we became so desperate we did whatever we could and we explored every avenue in an attempt to do anything.
"Having lost the fight our whole family is now united in grief with determination to do something, so that a cure can be found sooner rather than later."
Alison’s grandfather Colin Hinton and her uncle Chris Hinton were among families, carers, scientists, charities and politicians who joined the national charity Brain Tumour Research at the event in urging MPs to reverse the "unacceptable" level of investment into finding a cure and improving treatments for the 16,000 people diagnosed each year.
The chief executive of Brain Tumour Research, Sue Farrington Smith, Julie’s sister, said: "We owe it to my niece Alison Phelan and all of those lost to this dreadful disease to do all we can to bring about change and are asking people to urge their MPs to take part in this very important debate."
Brain Tumour Research is challenging the government and larger cancer charities to increase the national investment in brain tumour research to £30-£35 million each year, the same level of investment other cancers, such as breast and leukaemia, receive.
People can find out more at www.bit.ly/campaign4cure.