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This month we told the story of a British woman miraculously survived after doctors flew a “liver in a box” thousands of miles from America to save her life with just hours to spare.
Teacher Helen Rawlinson, 29, was dying of liver failure and faced a race against time to find a donor organ.
But because she had a heart condition and had already had a transplant before she never made it to the top of the transplant list.
With just days before doctors predicted she’d die, medics in America heard of her plight and a revolutionary machine was flown 3,500 miles.
The gadget – dubbed a ‘liver in a box’ – acts like a miniature transportable ICU that keeps donor organs alive and healthy by mimicking the human body.
It meant a liver she previously couldn’t have used was suddenly totally adequate.With just 48 hours to spare, the organ was transported from the deceased donor and her life was saved.
How Helen shared her story
After Helen filled out the online story valuation form, one of our expert writers called her straight back.
Helen told us the whole story over the phone, and we did the rest. Our team arranged an exclusive deal with The Daily Mirror for the highest fee possible.
If you want to sell an inspirational story to magazines, newspapers, television channels or websites, get in touch today. You can read more about Helen’s amazing story below.
Helen’s incredible story of survival
Helen – who was previously receiving palliative care and had said her final goodbyes to loved ones – she said owes her life to the machine.
She’s the first person to successfully undergo have a re-transplant – a second one – using the machine which could soon be in UK hospitals.
It works by mimicking the body so ‘lower quality’ livers can be kept healthy and transported, and also tested – something doctors can’t usually do.
Helen, from Lancaster, who is engaged to Darryl Flynn, 28, said: “I was running out of time and options and I thought this was it – I’m going to die.
“I had fought for so long and I had tried to stay positive and hopeful. I said to my fiance I want him to take me home to die. He was distraught. It was absolutely horrendous for us.
“I was on my deathbed. I wrote letters to my family for when I was gone. I didn’t think I’d get a new liver and I had to come to terms with dying.
“The machine saved my life and can save so many others. It preserved the organ and made it possible. It kept the liver healthy for me. Without it I wouldn’t be here now.”
Liver had completely failed
The English and maths teacher started to feel unwell in 2008, suffering with severe fatigue and had yellow skin, and was eventually bed bound.
Tests in March 2009 revealed her liver had “completely failed”, and she was diagnosed with autoimmune hepatitis – where the immune system attacks the liver.
She was placed on the emergency transplant list, a match was found within a week, and she had the op.
“It took me a year to recover properly,” she said. ” My body felt like it was broken.” She lived normally until a regular blood test in August 2016, revealed an elevated white blood cell count – a sign her condition was back, and her liver was under attack again.
She was also diagnosed with a congenital heart defect – something she’d had since birth. It was totally unrelated to her liver problems, but meant she needed a stent put in her heart, and after the op she was placed on the organ transplant again in March 2017. But a liver wasn’t assigned to her, and despite “dying” in hospital she was only 47th on the priority list.
She was deemed too poorly to have a liver from someone who died of loss of heart and lung use – called a DCD, or ‘donation after circulatory death’, organ. This is because those livers are more likely to be damaged by lack of blood circulation, making them more likely to fail. But she also wasn’t high enough up the transplant waiting list for the other type of livers – DBD or donation after brainstem death.
This was because her heart op and previous failed liver made her a higher risk of a second fail, so she was seen as a less ideal candidate for the ‘higher calibre’ organ.
Liver transplant allocation system
Under the UK’s liver transplant allocation system, higher quality DBD – or ‘brain dead’ livers – are prioritised to those who need it most AND are likely to recover.
There are currently 6000 people waiting for a transplant in the UK and Helen risked dying before a matching liver became available for her.
She said: “I was so, so poorly. I spent the next four months dying in hospital. I turned extremely yellow and was really skinny. I looked awful. Things just spiralled out of control, I was in a terrible state.
“I was on the transplant list but until it was my turn there was nothing they could do for me. I was just waiting and waiting and I felt myself just wasting away.
“My family tried and tried to get me moved up the list but there was no movement. I was getting worse but was getting no higher on the list. We fought to get priority but got nowhere.”
With time running out and with none available her surgeon, Magdy Attia, found a ‘loop hole’ in the system which gave her chance of survival. Under the UK’s liver transplant allocation system, higher quality DBD – or ‘brain dead’ livers – are prioritised to those who need it most AND are likely to recover.
He found a way for her to be able to have a DCD – ‘heart death’ – liver which had become available – a state-of-the-art machine all the way from America.
The OSC Perfusion machine is currently undergoing clinical trials in Massachusetts, America. The portable machine mimics the human body and allows organs to be preserved during transportation between the donor and the recipient.
It meant that suddenly a ‘lower quality’ ‘heart death’ liver was perfectly fine for her. This is because the machine kept the liver alive by mimicking the body – long enough for it to stay healthy, remain undamaged, and be transported to Helen.
It also meant doctors could test it wasn’t damaged, reducing the risk to Helen – something that can’t usually do with ‘inferior’ heart death livers.
If it wasn’t for the machine, the operation would have been too risky, and she would have died before she made it to the top of the list for a ‘less risky’ brain dead liver.
Similar machines are currently being used in a handful of hospitals in the UK – called OrganOx – but they were not available for Helen. Her surgeons were not trained to use the machines and could not be transferred to another hospital – who also have a long list of patients waiting for a transplant.
Dr Attia said: “We do not have the OrganOx machine at Leeds. This is something that needs planning and is a long process.
“That is the reason we could not use the OrganOx for her. Helen was on Leeds waiting list and can not be transferred to other centres as every centre have a waiting list of sick patients of their own.”
The TransMedic machine
The TransMedic machine isn’t readily available for patients as it is still undergoing clinical trials, with the study due for completion in December 2020.
Her surgeon explained the operation would still be a “big risk”, but reached out to the company asking if his team could borrow a machine to help save Helen’s life.
Time was running out for Helen – but amazingly in June the company, TransMedics, agreed to help out – if a suitable donor could be found. But one didn’t become available until mid August – the day after she’d been put on palliative care, and had asked to go home to die.
She added: “I was on my deathbed and I thought this was it. “My nurses made me as comfortable as possible as I was told to write letters to my loved ones. I had basically given up all hope by the time point.”
In a frantic race against time, the OSC Perfusion machine was flown 3,500 miles from America and rushed to the bedside of her donor ready for preserved transportation.
It made it to the UK just two days before Helen had been told a week earlier, she would likely be dead. Helen said: “We were all absolutely over the moon. It was literally touch and go.
“They said I only had until the end of the week.” Helen was rushed into theatre for an operation that saved her life.
The machine did save my life
Helen said: “The machine did save my life. Without it I would be dead. “They took it to where the donor is. All I was told is that they were in the north of England. They wouldn’t tell me where.
“The liver was put into the machine and sent to me in Leeds. It was preserved for the journey.
“What the company did, to send me the machine, was absolutely amazing. “They completely saved me and have changed my life.”
Within days Helen’s yellow tinge disappeared and ten days after the op she was allowed home. Dr Attia said the machine is the “Rolls Royce” of organ transplantation compared to riskier “Toyota” options.
The consultant liver transplant surgeon said: “DCD livers are lower in quality and present a higher risk for transplants.
“The machine tests the function of the organ. It’s also one way of avoiding damaging the liver. It’s kept warm and supplied with oxygen.
“When we had Helen we didn’t have a DBD liver available to us. It was out of the question. Helen was very sick and was disadvantaged by the allocation system. The only way to treat Helen was with a DCD liver using the machine.
She needed a transplant urgently
“We approached TransMedics on compassionate grounds. We said if we are to save Helen we need this machine.
“They agreed to send it to us for free with no hesitation. They responded within 24 hours and machine was available to us within a week.”
Helen will marry welding inspector, Darryl, in May, after defiantly turning down the opportunity to get married in the hospital’s private chapel. Nurses gave her the option to tie the knot, in June 2018, with medics fearing she may never get better. But Helen turned this down and says going ahead with a hospital wedding would have felt like she was “giving up”.
She said: “I always held on to hope that I’d get better and wanted to stay as positive as possible. I did everything I could to keep hopes high.
“The nurses were just being realistic. They didn’t want me to have missed out on anything if I ended up not making it.
“But we never considered it. That would have felt like I was giving up. Darryl always said we should wait and do it right when I’m better.”
However Helen is busy planning her “dream” wedding and receives daily physio – but has been told she won’t be fully recovered for at least a year.
Doctors have been left “amazed”
Over the last eight months Helen has been attending regular health checks but says doctors have been left “amazed” at her seamless recovery. She says she feels healthier now than she has done in years and has thanked those at TransMedic who helped to save her life.
Helen said: “Those four months in hospital were horrific and my whole family didn’t think I’d make it. I thought the recovery would be so difficult but I have done really well. I have been able to live my life and I am so grateful.
“I couldn’t thank the company or my doctors enough. I can’t put it into words how lucky I feel. Without all the help I got I wouldn’t be here. I’ve got a life now. There’s no greater gift than that.”
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