Christine Jardine: Anthony Nolan touched our hearts – and now we must live up to his legacy

Anthony Nolan with his mother Shirley, who set up the bone marrow register which now has more than 700,000 potential donors. Picture: PA
Anthony Nolan with his mother Shirley, who set up the bone marrow register which now has more than 700,000 potential donors. Picture: PA
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As a child one of my favourite Sunday evening treats was to stay up and watch Esther Rantzen’s That’s Life.

One Sunday amongst the tales of mis-shapen vegetables, innuendo-loaded odes and the emerging talent of Victoria Wood, there was the story of a three-year-old boy whose fight for life touched the nation’s hearts.

You might remember Anthony Nolan too.

He had been born with a rare, inherited blood condition called Wiskott-Aldrich syndrome. The only cure was a bone marrow transplant.

None of his family were a match and his mother Shirley was, at that time, trying to set up what became the world’s first bone marrow register in a desperate attempt to save her little boy’s life.

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Sadly Anthony died when he was just eight years old.

But the register his mother started, more than 40 years ago, has grown into a charity which now deals with stem cell and bone marrow transplants, has more than 700,000 potential donors, and is called simply Anthony Nolan.

It now helps three people each day to find that life-saving donor match.

Blood cancer itself is an umbrella term for cancers which affect the blood, bone marrow and lymphatic system such as leukemia, lymphoma and myloma.

It is the fifth most common type of cancer in the UK and the third biggest killer.

I am sure that I am not alone in knowing those whose lives it has affected.

We have a family friend – a lovely warm family man - who has managed to hold it at bay for several years.

By contrast I remember a young woman I met at the very beginning of my journalism career.

Bright friendly with enormous potential she was diagnosed, admitted to hospital and died in a handful of days. She was still a teenager.

I won’t pretend that she and I were close. I had only known her for a few weeks.

But the impact of how quickly and mercilessly blood cancer can steal lives has stayed with me for more than two decades.

Every time I hear of leukemia I think of her and how she had lost the battle that Anthony Nolan aims to give others the weapons to fight.

But while it conducts world-leading research into stem cell matching and transplants and is constantly looking for global solutions, the organisation is also both active and effective in local campaigning.

Part of its work is the Communities vs Blood Cancer campaign, which shines a spotlight on what is being done at a local level to ensure every patient in need of a stem cell transplant can find a lifesaving donor.

In Edinburgh West alone there are more than 1,000 people who have added their names to the register.

That number of potential donors in one part of the city is hugely impressive, and if any of them are reading this I hope they are aware of how appreciated they are by those who depend on their generosity of spirit.

That latter group is also much bigger than you might expect. Two thousand people every year need a stem cell or bone marrow transplant in the UK.

Only 60 per cent of them get the best possible donor.

And when you break down the donor statistics, you can see clearly the gaps and what is needed.

Of those amazing donors in Edinburgh, only 34 per cent are male, and what is missing across the UK is a significant number of non-white and mixed-race donors.

And while more than half of the donated stem cells and bone marrow come from males aged 16 to 30 they make up less than a quarter of the register.

The imbalance in what the register has and what it needs is clear.

What is key now in the battle against blood cancers is to encourage people from these backgrounds and age group to register as stem cell donors, a process which is now much more straightforward than most of us imagine.

September has been Blood Cancer Awareness Month.

The Anthony Nolan charity visited parliament and at our party conference last week I sat down with one of their representatives to hear about the issue they face.

The organisation is clear that there is still a mountain to climb in improving the outcomes and quality of life their patients need and deserve.

As we parted I thought about that little boy on That’s Life and the mother who had fought so hard for him, and for others. Their situation at the time had seemed particularly cruel.

There was a solution for Anthony – a bone marrow transplant – but finding that donor then involved a search much harder than the cliched rummaging through a mountain of hay for a small needle.

That the register Shirley Nolan established has come so far and achieved so much is a tribute to both mother and son.

And despite their personal loss they have ensured thousands of lives have been saved, and thousands of families have reason to remember Anthony Nolan.

Christine Jardine is the Lib Dem MP for Ediinburgh West