BACK in 2013, when she was just 16, Cwmbran teenager Emily Clark noticed her stomach was swelling up.
At first she thought she was just bloated, or had put on some weight – although she was not eating more than normal.
Aside from the occasional cramping, she had no other symptoms.
But then, just before Christmas in 2013, the doctor told her she had non-Hodgkin lymphoma.
It was a diagnosis which would change the course of her life, as well as inspiring the lives of many others both in Gwent and further afield.
Tireless campaigning and fundraising in the following years led to hundreds signing up as bone marrow and blood donors.
Her mum, Donna Dunn, said two people’s lives have been saved after being matched with bone marrow donors who signed up only because of Emily.
But on Saturday – after fighting the disease twice and going on to celebrate a whole year being cancer free – Emily died from problems related to her breathing.
Tributes poured in – many from people who Emily and her family never met.
They remembered the 18-year-old as a bright and inspirational young woman who will leave behind a great legacy.
Non-Hodgkin lymphoma is a rare type of blood cancer, but Emily had an even rarer type within that category: Burkitt lymphoma.
She had treatment for nearly four months, staying in hospital at the Teenage Cancer Trust unit in Cardiff for 10 out of the 15 weeks, following her diagnosis, and underwent four courses of chemotherapy.
At the end of March 2014, Emily was discharged from hospital and then in April she found she was in remission and cancer-free.
But around six months later she and her family were dealt the terrible blow that the cancer had returned.
She underwent more chemotherapy while an Argus-backed appeal was launched to find a donor to provide life-saving bone marrow.
The chemotherapy worked, a donor match was found and Emily had the transplant. She essentially began to grow a new immune system.
Things were looking up for the Croesyceiliog Comprehensive School pupil, and in December last year she celebrated being one year cancer free.
By this time, Emily had already inspired hundreds with her bravery and spirit, and had a widely-read blog, called Remission possible.
It documented the ups and downs of her post-cancer life and also detailed her many ambitions.
Trek to base camp at Everest, attending university, and getting teenage cancer awareness on the national curriculum were among them.
She came to the attention of many in Newport when she spoke to more than 300 people at a charity dinner organised by Newport’s then mayor, Matthew Evans, in October 2014.
Cllr Evans said: “When she spoke at the Celtic Manor, she was so inspirational, it felt like a professional 40-year-old speaker.
“The whole place welled up with tears.
“The amount of promotion she managed to do for the charities was phenomenal.”
Cllr Evans said he first met Emily when he visited the Teenage Cancer Trust, just before he chose the organisation as his annual mayoral charity.
“They get incredibly good care down there,” he added. “Getting cancer at any age is terrible but as a teenager it is particularly harrowing.
“But she (Emily) was always incredibly positive and upbeat.
“We raised over £30,000 for the Teenage Cancer Trust and she was an enormous help and assistance to that.”
As part of her campaign to find a bone marrow match for herself, and the 1,800 other people searching in the UK, Emily began to call on people aged 16 and 30 to join the bone marrow register for charity Anthony Nolan.
She also called on people aged between 17 and 55 to join the Delete Blood Cancer bone marrow register.
The appeals did not stop; she continued with more and more creative ways urging people to get involved.
Alongside the General Election in May last year, the teenager called on 16- and 17-year-olds who could not vote, to make a difference by joining the stem cell register.
She said at the time: “I’m on the long road to recovery and have a future now and that’s all thanks to my donor.
“We need more people like my donor to be heroes and stand up in the fight against blood cancer not just for me but for everyone who needs a transplant.”
Anthony Nolan could not provide a figure as to how many people are now on the register thanks to Emily, but said it was definitely “many hundreds”.
Henny Braund, chief executive of the charity, said they were truly saddened to hear of Emily’s death.
Mr Braund said: “She was such a bright and inspirational young woman who selflessly campaigned to raise awareness, vital funds and recruit stem cell donors, despite all that she was going through herself.
“Her determination in the face of such adversity touched so many lives and inspired countless amounts of people to sign up to the Anthony Nolan register.
“Thanks to all her tireless work, she leaves behind a great legacy and hope for others desperately searching for a match.”
Debbie Jones, regional fundraising manager at Teenage Cancer Trust, added: “Emily and her family dedicated a huge amount of time and energy towards supporting us and, as a result, they have succeeded in raising an incredible £5,000 that will be spent on supporting other young people across the UK facing a cancer diagnosis.
“Emily not only fundraised for us but she also worked tirelessly to raise awareness of the signs and symptoms of cancer in young people. We are extremely grateful for the support Emily’s family have given us over the past year and our thoughts are with Emily’s family and friends at this difficult time.”
Tracey Rees, of the Welsh Blood Service, added: “Emily was a fantastic ambassador and continually raised awareness of the bone marrow registry, her courage, bravery and fight for life touched so many people.”
Emily also chose to raise money for charity Bloodwise, formerly known as Leukaemia and Lymphoma Research.
Rachael Davies, Bloodwise regional manager for Wales, said yesterday: “I first met Emily in October 2014 when she stood up in front of a room full of people to talk about her blood cancer experience.
“It was clear that she was absolutely determined to raise awareness of the disease and to encourage people to sign up to the bone marrow register.
“Last October she attended a Bloodwise research open day at Cardiff University where she was able to look around the labs and see the work that goes on in the field of blood cancer research and I know this made her really happy. She had a real passion for science.”
Emily’s passion for science was something her mum talked to the Argus about following her death at the weekend.
Ms Dunn said Emily dreamed of studying microbiology at university and had long conversations with Keith Wilson, her consultant doctor.
“They were giving her science lessons,” Ms Dunn said.
“She always wanted to be part of team as a professional, she wanted to do more of a lab role.”
Ms Dunn added: “Something Dr Wilson said to me late on Friday night, he said whether I had any questions.
“I said, ‘I haven’t understood anything you’ve said in the last 14 months’ because they were all pitched for Emily, almost pitched for a junior doctor.
“She was very much part of the process. They were a team.”
Ms Dunn said the doctors got on board with her ambition to pursue a career in microbiology, while Emily adopted their dream to fundraise for a new building for Cardiff’s teenage cancer unit.
David Taylor, head teacher of Croesyceiliog Comprehensive, said: “We remember at one point she was interested in becoming a doctor. She certainly had the ability to do that, she would have been a fantastic doctor.”
He added: “She was a model student in every way. She was a lovely young lady and motivated and inspired staff here to raise lots of money for the charities.
“She managed to get many staff and students to sign up as bone marrow transplant donors.
“She’s going to be greatly missed because she had been an inspiration to everybody in the school. She was always cheerful.”
In fact, Emily’s dedication and fundraising carried on right up until the end. Ms Dunn explained how just the week before she died, Emily had spoken about organising a charity ball and gin-tasting afternoon tea. Her family are now planning to make them a reality in her honour.
Bloodwise regional manager Ms Davies added: “Emily and her family have fundraised for Bloodwise and raised thousands in the last year or so, organising an afternoon tea, a Santa run and a dress down day at school.
“The world has lost a truly inspirational and determined young lady and our thoughts are with her family.”
In nearly every tribute to Emily which was shared, two words were consistent: inspiration and legacy.
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