I was the boy who saved thousands of lives by inspiring the Anthony Nolan

Source: HERE

Feb 12, 2014 19:15 By Warren Manger

As Anthony Nolan celebrates its 40th anniversary, Simon Bostic tells how an international hunt for a bone marrow donor to save his life led to the register which now boasts half a million potential donors.

Inspiration: Simon Bostic at Victoria Falls in Zambia
during a Comic Relief 2013 celebrity Zambezi challenge

It may seem incredible but Anthony Nolan, the charity which helps to organise the most selfless acts of giving, has just turned 40.

Thanks to the 500,000 volunteers now on its register , who are willing to donate their bone marrow to total strangers, one million stem cell ­transplants have been carried out worldwide, saving the lives of people with blood cancers.

The charity was the legacy of a little boy called Anthony Nolan, who had a rare condition called Wiskott-Aldrich syndrome and needed a bone marrow transplant. In a desperate bid to find a match, his mother Shirley set up the world’s first register.

But a little-known fact is that her ­incredible work was inspired by another small boy called Simon Bostic, who at the age of two had the first ever bone marrow ­transplant from an unrelated donor.

Simon should have died before his third birthday after being born with the same rare blood disease that killed his older brother Andrew. His only chance of survival was a transplant, but neither of his parents were a match.

Desperate not to lose another son, his mother Elisabeth pinned her hopes on finding a stranger who was willing to go under the knife to save her baby.

Relief: Simon with parents Elizabeth and Roge

She had enormous odds stacked against her – Simon’s tissue type was so rare, only one person in 50,000 would be a match. Worse still, no one had ever survived a bone marrow transplant from someone outside their family.

Yet the search spread around the globe and in 1973, after a donor had finally been found, Simon became the first person to survive the experimental operation.

The transplant not only saved Simon’s life, but also inspired Shirley Nolan. Like Simon, none of Anthony’s family was a match and in desperation Shirley contacted Simon’s mother Elisabeth for help.

Simon says: “Shirley came up against all kinds of barriers. There were lots of problems with funding because the success rates weren’t very high at that time.

“But my mother told her she had to keep fighting, she had to do whatever she could for Anthony. In that respect they were very similar, they were very determined women.”

That convinced Shirley to launch a register to collect tissue types that could find suitable matches for children like Anthony. Sadly she never found a donor for Anthony and he died in 1979 when he was eight.

Simon, now a charity operations manager from South London was the lucky one. He says: “At that point it was a certainty that children with my condition did not live past early ­childhood, so the fact I am still here is pretty miraculous.

“My mother was a strong woman and she did a lot of campaigning. She started by getting her friends tested. Then the local press wrote an article about it and the national press picked it up.

Lucky to be alive: Simon Bostic  

“It spiralled into a huge campaign, asking ‘Who can save this child?’ ­Thousands of people got their blood checked to see if they were a match. There were people in Australia, the United States and Europe coming forward.”

Simon was born with chronic ­granulomatous disorder, or CGD, which meant his bone marrow produced faulty white blood cells that could not fight bacterial infections. It meant any infection, however harmless to other children, could prove deadly to him.

Simon, now 42, says: “My brother Andrew died when he was two and a half years old. For a long time they didn’t know what was wrong with him, which was horrendous for my parents.

“When they finally diagnosed Andrew, they diagnosed me pretty much immediately. In that respect I was lucky. They diagnosed me before it was too late, unlike poor Andrew.

“My mother was absolutely paranoid about bacteria. When the transplant was about to take place, she wasn’t convinced the sterile conditions were adequate, so the night before she tore up the consent form.”

The search spanned several continents, but a donor was found near Simon’s Cambridge home. Joan ­McFarlane was a 28-year-old housewife just months older than Simon’s mother. She now has ­children and grandchildren of her own.

Simon says: “Joan was incredibly unfazed by the whole thing. She just did what she could to help and I think she was a bit ­embarrassed by all the attention.”

Friday April 13 1973 was Simon’s lucky day. Joan was admitted to Westminster Children’s Hospital, South West London, where surgeons took bone marrow from her hips and transplanted it into Simon’s blood. It was three weeks before they knew if the operation had worked. Meanwhile his parents could only watch and wait.

Legacy: Shirley Nolan with Anthony

Simon can even still remember the intense media interest in his story.

Simon says: “I have vivid memories of my time in hospital, seeing photographers with their cameras pressed against the glass. There was so much emotion around that some of it has stuck with me.

“As I left the hospital there were cameras and television crews everywhere. All the hospital staff were lined up outside and I was carried out in my father’s arms. It was an absolute hoo-ha.

“I had to go back regularly to check the donor cells were still there and for signs of infection. I hated that. We had to go down into the basement and I had dreadful veins, so it was always such a trial to get blood out of me.”

Sadly, when Simon was seven, tests found there were no donor cells left in
his body.

Simon says: “We were still in the Jurassic period for this kind of surgery. It was pioneering stuff. The transplant was a success and it saved my life, but ­eventually it ran out.

“It was a shock to everyone. I was in the same boat as before, except that antibiotic treatments had improved so they could look after me much better.”

The setback was too much for Simon’s mother Elisabeth. At that time Simon’s dad Richard was fighting lung cancer and would eventually win. Faced with that ordeal and the prospect of losing another son, she took an overdose. What was meant to be a cry for help killed her.

Simon says: “After Andrew died she shut that off and said, ‘I’m fine, let’s focus on Simon’. But she was ­devastated and never really got over it.

“She was the stormy, self-willed type and she coped first time around by throwing herself into campaigning. I think the mere hint of all that happening again was more than she could bear.”

Elisabeth may be gone but her steely determination has lived on in Simon. He decided not to have a second ­transplant, which could have involved searching for a new donor, as the transplant meant he now had an even rarer tissue type.

He preferred to take ­medication that would ward off ­infection, and took two types of antibiotic and anti-fungal drugs every day. As the risk of deadly infection returned, Simon was told not to take part in contact sports or swim in the sea.

But he insisted on being allowed to do gymnastics lessons so he could clamber on the climbing frames and tried to join in his friends’ games at every opportunity.

Over the years Simon developed slight fibrosis in his lungs and has been admitted to hospital periodically with a variety of infections. Just before his 18th birthday, the doctors discussed the idea of a second transplant again, but Simon refused. After graduating with from university with a degree in modern languages, Simon signed up to travel the world as a tour leader. His adventures have taken him trekking along the Great Wall Of China and tracking gorillas through the mountain forests of Uganda.

Simon says: “I’m a wildlife fanatic but I can’t go to the zoo as there’s a risk of infection from hay. I went to see the animals in their natural habitat.

Fighter: Like mother like son

“The doctors weren’t very happy about it, but I had my mother’s blood and I wasn’t going to be held back again by my health. I had been given a second chance and I wanted to live life to the full.” That attitude has served Simon well. He won a silver medal as one half of a Latin and ballroom dance ­partnership at the gay Olympic Games in Amsterdam in 1998.

His passion for dance also helped him to find love as he met his partner ­Christopher Barrons at a dance group. Simon is now head of operations at Charity Challenge, which ­organises ­fundraising expeditions for charities like Anthony Nolan. It is his way of giving something back to the charities that helped him so much.

He still takes antibiotics every day, but he is healthier than many others with CGD and, as many patients are now treated only with medication, he wonders if that is thanks to the ­transplant he had as a boy, .

Simon says: “I have always lived with the shadow of death hanging over me and even now I know there will be a time when I develop an infection and the doctors won’t be able to cure it.

“I’ve been through a lot of stress and trauma, but I’m grateful for the life I’ve been given because the chances of me surviving were negligible.”

Now helping publicise Anthony Nolan’s 40th anniversary Simon feels it is a real honour to be part of something so special.

Simon says: “Anthony Nolan’s work is so important. The fact we don’t need a worldwide appeal every time a child is born with leukaemia or something similar is wonderful. It offers people hope that they might not have had.”