A mum who wrote an incredible blog charting the birth, life and death of her premature son hopes its pages will continue to help other parents.
Nicky Massey's youngest son Ethan died shortly before his fourth birthday in September 2013.
Born 16 weeks early, he spent the first couple of years of his life in and out of hospital, before an eye infection fatally spread to his lungs.
As Nicky cared for her vulnerable son she charted the emotional journey of hospital visits, diagnoses and treatments in a series of honest blog posts.
Almost five years on from Ethan's death she continues to honour his memory and put her energy into supporting good causes.
Despite a fear of heights Nicky, from Cambridge, will abseil 80ft off the city's Guildhall to raise money for East Anglia's Children's Hospices (EACH).
'He was such a cheerful, happy child'
Ethan weight just 760 grammes when he arrived in the world in 2009, four months early, and suffered from damaged lungs.
"He spent so long in hospital, and first came home at 10 months old looking very much like a tiny dolly, and was in and out of hospital until he was two and a half," said Nicky on her fundraising page.
"There were many many times I was told to say goodbye to him, and every time I whispered 'hang on, keep fighting' and he did. Every time."
Ethan's treatment took him through five hospitals putting huge pressure on his family, but his sunny nature helped keep his mum going.
"He was such a cheerful, happy child and although he was non verbal he could hum any tune and he would communicate through music," said Nicky. "His smile would brighten everyone's day."
'They asked the difficult questions'
In 2013, Ethan caught an eye infection at school that took advantage of his lungs and Nicky was told the news that any mother dreads.
"I was told that my time with Ethan was going to be far shorter then anyone could have imagined," she explained.
"There wasn't anything else we could do, the fight was nearly over. As a parent that had fought for so long it was hard to understand and to know what happens next."
It was at this point that the East Anglia Children's Hospice stepped in to offer their support, taking Ethan to their hospice in Milton to help Nicky transition into palliative care.
"They were amazing, for the first time since he had been born they took over his care," Nicky told the News.
"Little things like change the nappy and giving medicine they did for me."
"They asked the difficult questions – when the time comes what do you want to do? Do you want music? What do you want at the funeral?"
After two weeks Ethan returned home where he had access to specialist equipment and regular visits from doctors and nurses.
"We really thought that perhaps after all that Ethan was going to 'show them all' once again," wrote Nicky.
"However sadly on September 16, 2013, Ethan passed away at home."
She added: "The staff came out to my house they told me what the stages were. The nurse was calling me, she was incredible, asking are you sure you don't want to come to the hospice?"
"When the time came when he died at 3am, my instinct was to call the last number and it was the nurse who did the night shift before.
"She came out and put him in her child's car seat and sobbed all the way to the hospice.
"They literally took over everything after that. The support that they gave the family and the children in the immediate days afterwards, then supporting me at the funeral, it's a service like none other really.
"Without the support I certainly wouldn't have been able to keep him at home and I'm not sure I would have been as strong as I am now."
'I realised my family needed me'
In the aftermath of Ethan's death Nicky threw herself into activity, organising a charitable memorial concert for him.
"I focused initially on the memorial because I felt like I was still helping him," Nicky explained.
"My immediate reaction was to head back to work but that was a bad idea.
"I realised my family needed me. Just to be together for a bit, something we hadn't done because Ethan had been ill for so long."
Of course the years of caring for Ethan and losing him so young have changed Nicky.
She's now proficient in "medical speak" and has developed a fight that she challenged in local activism and politics.
"It's made me realise that if I did keep shouting loud enough I could make change happen," said Nicky.
Only this month, she was elected as a Labour councillor for the Abbey ward on Cambridge City Council.
'I don't know what the future would have been for him'
For a few years after Ethan died she kept her blog running after receiving emails from people saying how it had helped them.
Nicky's final heartbreaking post in October 2015 details how much she misses her son who she will love "until my last breath".
Still today Nicky remembers Ethan in the smallest moments. If she sees a child with blond curly hair she wants to pat them.
She feels an urge to talk to families in the street with disabled children. Once on holiday a crying child sounded so much like Ethan she had to be lead away by her daughter.
"He would be eight now, nine this October," said Nick. "Some of my friends have eight or nine-year-olds born the same month.
"I find it difficult to be able to understand that my son would be as big as that and do the sort of things they are doing.
"I don't know what the future would have been for him.
"He wasn't verbal and couldn't walk for any long period of time, so he would have had to have been in a wheelchair I expect.
On May 13, Nicky and her 16-year-old son Ben and 12-year-old daughter Eliza will abseil down the Guildhall for EACH.
"I'm absolutely petrified of heights. I have a phobia of them," Nicky said. "For us its something else to do in his memory. He's been gone four and a half years
"The children want to do it because of what the hospice did for us. We feel like we need to repay them in some way."
To sponsor Nicky and her children, visit their fundraising page: www.justgiving.com/fundraising/nicky-massey.