Her battle with a life-threatening disease catapulted Alice Maddocks into the spotlight when she was just a child - but now she is an adult. Katie Baldwin talks to her about how her life developed, and about her latest challenge.
“When I think about it now, it’s like it’s someone else’s life.
“Things are so different now.”
That’s the verdict of Alice Maddocks on the whirlwind journey which led to her becoming a household name across the region, and beyond.
It was during, and due to, an unimaginably traumatic time in her young life.
But because of her, and her family’s bravery, huge changes were made that would benefit thousands of others facing the same fate.
And Alice herself is in long-term remission from the disease which threatened her life.
She’s now nearly 20, has started her 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, which 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 at risk.
“My mum and dad never let me know how serious it was,” said Alice.
Hospital stays 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 was a bone marrow transplant.
But her chances of finding a match were lower because of the family’s ancestry and hindered further by the lack of available donors at that time, which they said was due to the register system then in place.
“I have got mixed Mediterranean blood and that’s why we started the campaign,” Alice said.
“I was always on the register, 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.”
However not only the lack of donors made it difficult. With her particular disease the levels at which the donor needs to match the recipient are much higher.
“For leukaemia you need a 75 per cent match, but for aplastic anaemia it’s 99 per cent,” she explained.
With the help of the Yorkshire Evening Post, Dean and Carol launched a campaign for the Bone Marrow Registry 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 100 readers backing it within two days of its launch in 2001.
What really cemented the success of the campaign though was Carol’s infamous run-in with then Prime Minister Tony Blair on live TV.
Appearing on BBC Question Time, she told him that the NHS was currently letting Alice down and without a transplant, her daughter would die.
Watching with her elder sister Chloe at their grandma’s house, that was the first time Alice had heard her say she could lose her life.
The girls however, 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.”
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, 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 said.
“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 but it’s so hard to treat,”
Though for Alice personally there was no donor, 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 the efforts her parents made were hugely important.
“Even though they did 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 had a big impact on her life.
She was a regular on the pages of newspapers and on television over several years.
The family were contacted by celebrities like Sir Alex Ferguson and Esther Rantzen who offered their support.
Alice was also treated to special trips like a visit to Manchester United where she met the players.
Though she got used to being in the media, during her teenage years it wasn’t always easy.
As Alice’s health had improved and the bone marrow campaign was a success, she had several years out of the public eye.
Her family have remained incredibly 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 and though she was diagnosed with a secondary blood disease a few years ago, it is well-managed with medication.
After considering a career in medicine, she decided to instead work 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 also from ordinary people who didn’t even know her.
That’s 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 helps families affected.
So she, along with her dad, are in training to do the Great North Run for the charity on September 16.
“I wanted to give something back,” she said.
“One reason why it’s so important to raise money is to find other forms of treatment. It’s crucial to have other options than a transplant.”
Always determined, she has been doing plenty of training.
And surprisingly, she has no negative feelings about her illness.
She said: “I am a better person for having it, because of all the experiences I have had.”
* To support Alice’s fundraising, log on to www.justgiving.com/Alice-Maddocks.