Little girl who captured Tony Blair’s heart

Alice Maddocks looks back on her own short life with disbelief sometimes. “When I think about it, it’s like it’s someone else’s life. Things are so different now.”

As a youngster, illness took Alice on a whirlwind journey which led to her becoming a household name across the region and beyond. Fame unfortunately came about due to an unimaginably traumatic time in her young life.

But because of Alice’s bravery and that of her family huge changes were made that would benefit thousands of others facing the same fate.

Luckily, Alice herself would, in time, recover from the disease which threatened her life. She’s now nearly 20, has started a career and is well enough to take part in the Great North Run for the charity which supported her parents through her illness.

Alice’s unusual journey started with her being diagnosed, at the age of seven, with a rare form of severe aplastic anaemia.

Her mum Carol had taken her to the family doctor, worried about mysterious bruises on her daughter’s arms, head and neck. This led to hospital visits, tests and biopsies.

She remembers snippets of this time, especially the school play she was desperate not to miss. At the time she was too young to realise that her life was potentially in danger. “My mum and dad never let me know how serious it was,” says Alice, who turns 20 tomorrow.

Those hospital stays over several years involved being treated with a gruelling immuno-suppressant drug, while she also underwent countless blood transfusions.

Doctors told Alice’s parents Carol and Dean that her best hope for any kind of future was a bone marrow transplant.

But her chances of finding a match in this country were lower because of the family’s Mediterranean ancestry. They were hindered further by the lack of available donors at that time, which they said was due to the system in place at the time not being well co-ordinated.

“I have got mixed Mediterranean blood and that’s why we started the campaign,” Alice says.

“I was always on the register (for a transplant), but the chances of getting a donor were narrow. A transplant is a much better route to a cure, and that’s why it’s so important to try and get one.”

The combination of few donors and Alice’s background made the chance of transplant very slim – and with her particular disease the levels at which the donor needs to match the recipient are much higher than with other illnesses where a transplant is needed.

“For leukaemia you need a 75 per cent match, but for aplastic anaemia it’s 99 per cent,” she explains.

With the help of the local media, Dean and Carol launched a campaign for the Bone Marrow Registry, then funded by a charity, to be funded directly by the Government and for new targets to boost the number of donors. They instantly attracted a wave of local support, with hundreds backing it within two days of its launch in 2001. What really cemented the success of the campaign was Carol’s famous run-in with then Prime Minister Tony Blair on live TV. Appearing on BBC Question Time, she told him about Alice and said that the NHS was letting her daughter down. She also told the PM that without a transplant Alice would die.

Watching the programme with her elder sister Chloe at their grandma’s house, this was the first time Alice had heard her mum explain just how seriously ill she was. However, the girls had other worries. “We thought my mum was going to go to jail,” Alice laughs now. “I don’t think we really knew what was going on.

“My mum said ‘she’s going to die without it’. The doctors had always spoken to my mum and dad separately, but my grandma told me that she had just said that for the TV.” The intensity of her mum’s efforts came as no surprise to Alice, who says that like herself, Carol is “quite fiery”.

Looking back now, she says she is immensely proud of her parents and how they campaigned for a cause they believed in so strongly. “They were basically told that if this treatment (I was already on) didn’t work, the doctors couldn’t do anything else for me,” Alice says. “If that happens, you just fight for your children. If mum’s passionate about something, she will make it happen. My mum and dad both did so well. Both of them were still working and still had a house to run.”

In reality, they didn’t know whether Alice would reach adulthood without a transplant. A donor for her was never found – but some time after her treatment finished, in her early teens, she started to get better.

“There’s no medical explanation as to why you get it, and for me there was no medical explanation as to why I got better,” she says. “After the treatment, there were no other options. All they could do was keep giving me blood. I’m really lucky – one in a million people get the disease, and it’s so hard to treat,” Despite Alice not getting the crucial call that a donor had been found, the campaign was a success. Following Carol’s confrontation with Tony Blair, the issue became a hot political topic and the changes the Maddocks had called for were implemented.

For Alice, a donor wasn’t her saviour, but she says her parents’ efforts hugely important. “Even though they fought the campaign, it didn’t get me a transplant – but we know people who, because of my campaign, went on the register and ended up being a donor for somebody else,” she said. “My mum and dad took a negative thing and turned it into a positive thing.”

The publicity that was generated also has had a big impact on Alice’s life. She was a regular on the pages of newspapers and on television over several years. The family were also contacted by celebrities like Sir Alex Ferguson and Esther Rantzen who offered their support. Alice was treated to special trips like a visit to Manchester United where they met the players.

Though she got used to being in the media, during her teenage years it wasn’t always easy.

“I remember the Press coming, having TV cameras and big vans with the satellites on our street,” she said.“At that age I was fine with it, but it got difficult as I got older.”

Alice said despite it all, her family life was still relatively normal.

“It was amazing for my parents to take on all that as well as everything else that was going on.

“We will never know how many people have been saved because of the campaign.”

As Alice’s health had improved, she had several years out of the public eye. Her family remains very close – Alice lives with 
Chloe, a few minutes away 
from their parents in Dewsbury. They all dote on younger brother Logan, nine.

She is still in good health, though she was diagnosed with a secondary blood disease a few years ago, which is managed well with medication. After considering a career in medicine, she decided to instead she’d enjoy working with numbers and is training to be an accountant.

Alice is still thankful for the support they all received when she was younger – from their family, friends, health workers and from countless strangers. This is why she’s decided the time is right to show her thanks by supporting charity the Aplastic Anaemia Trust, which funds research into finding a cure and also helps families affected. She and her dad are in training to do the Great North Run on September 16. Always determined, she has been following a rigorous training regime.

And surprisingly, she says she has no negative feelings towards her illness. She said: “I am a 
better person for having it, because of all the experiences I have had. I have always had a positive outlook on life, because I know how rare it was and how lucky I was compared to other children. Children have died or are still really ill, and it makes you want to make the most of your life.”

To support Alice’s fundraising, log on to www.justgiving.com/Alice-Maddocks.