Charity founder demands urgency in treatment a month after Olivia's death

Sad loss: Olivia Downie's death has raised awareness of Neuroblastoma.© HEMEDIA / SWNS Group

A month ago today, the death of seven-year-old Olivia Downie at Aberdeen Royal Infirmary prompted outpourings of grief at the passing of somebody who should have been at the beginning of her life.

Olivia's plight during her last few days, while she succumbed to the aggressive cancer Neuroblastoma - just 48 hours after being flown home from Mexico - understandably generated sympathy throughout Scotland and the wider world.

Yet, just a few weeks after the Fraserburgh infant's demise, Linza Corp, the founder of the charity, Families Against Neuroblastoma (FAN) has told STV that “nothing significant” has changed to raise hopes that other children, and their parents, will not suffer the same agony as Olivia in the future.

"It's a long road. There will be no major improvement until we focus on the illness and don't let attention surround individual children," said Corp, who established FAN in 2009, and has displayed a huge amount of industry in raising the profile of a condition which afflicts 100 families in Britain every year.

"It seems to take a tragedy to get people interested and I don't understand why there is there not more being done to examine why so many children die from Neuroblastoma when other countries are making positive strides in tackling it.

“As things stand, we don't have enough experts in the UK, there is no sense of urgency in carrying out trials on new drug treatments, and that is unforgivable, because we are still using the same drugs that we did 50 years ago."

Corp was incensed by some of the media coverage, which seemed more intent on orchestrating mawkish headlines than showing genuine concern for Olivia and her parents. But, in the intervening period, she has regained her sangfroid, working away tirelessly behind the scenes to heighten awareness of Neuroblastoma - not with sensationalism or tugging at heart-strings, but by asking health professionals in Britain to alter their perception of the illness.

"I think the most emotional thing about Olivia was that most people understood we were trying to bring her home to die, which is a completely different situation from sending somebody abroad so that they might survive," said Corp, who still feels aggrieved at the fashion in which Olivia's mother and father, Lauren and Steven, were criticised for not being tolerant about press intrusion into their lives at such a traumatic time.

"The story captured people's imagination for a few days, but there was no attempt to grasp how such a thing impacts on everybody in that family, not for weeks, or months, but for the rest of their lives. As for the charity, we received a few pledges from concerned members of the public, and one or two donations from those who wanted to make a difference.

“But there were no massive, life-changing developments and I am not really surprised at that. After all, what we really need is for a change in mindset from the NHS and the medical profession in Britain. And there has been no sign of that happening."

None of this means that Olivia Downie died in vain. But it does highlight the reality that these tragedies are too frequently here-today-gone-tomorrow phenomena, before the caravan moves on.

That is the perception which Linza Corp is determined to transform.

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