Daniel died at just 21 months old. Photo / Mercury Press
Daniel died at just 21 months old. Photo / Mercury Press
A brave mum is sharing the heart-breaking story of how she said goodbye to her 'warrior' tot - after spending nine days with his body after he died.
In a picture, which the Herald has not published here, little Daniel Farbrace's mum Ali Farbrace can be seen tenderly kissing her son on the forehead while his body lies tucked up peacefully in bed - a position which Ali says dad Dan, 38, likened to a "warrior being laid to rest".
Daniel tragically died at just 21 months old on June 19 this year after contracting parainfluenza while battling acute myloid leukaemia (AML) for the second time.
Ali said the couple were determined to share the picture to show their only child's legacy goes on after he 'sacrificed' himself - saving them from making the crushing decision to turn off his life support.
Ali, 35, from Tunbridge Wells, Kent, said: "His last act was to save us.
"When people say things like 'sorry for your loss' I don't really like that. He never lost at anything - we think he sacrificed himself for us.
"He's made it a lot easier for us. My feeling was that I wanted him to have quality of life, but it was stacking up against him, it wasn't fair. We just didn't want him to suffer.
"If we had had to make the decision to turn the machine off then we would never have forgiven ourselves. I do think he has saved us from that but that was Daniel, he gave so much and did it with such grace.
"He was on life support for nine days, there were so many times when I thought, he was going to die.
The Farbraces want to keep their son's legacy alive. Photo / Mercury Press
"Then the day he did die we didn't expect it. We just thought, 'You little b*gger.'
"I got to carry him across the corridor to the hospital cold room, which was an honour."
The picture was taken as the family came to the end of their stay at Demelza Children's Hospice in Sittingborne, Kent, where Ali said they made memories as Daniel rested in one of their cold bedrooms from June 19 to June 26.
After Daniel died, Ali and Dan even brought him home on the ninth day for their last night together before his "celebratory" funeral.
Ali, an intensive care nurse, said: "It's quite hard coping with death, he was still our baby.
"We shared that picture to show the story goes on after death. People have been so supportive.
"Dan said that picture looks like when they used to lay warriors to rest - and Daniel was a fighter.
"It would have broken us to go home straight away with nothing. When we got to Demelza it was just perfect. To spend that time with Daniel was lovely.
"We sang, and talked to him and read to him. We got so much more time. I didn't want to leave him on his own. He was so beautiful.
"He had never spent a day apart from me. He had his own bedroom, he was still a person, and it was so nice to see him without the tubes.
"Our friends got to come and visit too, and we really got to say goodbye.
"The night before his funeral he came home for the night. We were just glad we could all come home together. To spend our last night together was really nice.
The Farbraces want to keep their son's legacy alive. Photo / Mercury Press
"It's cr*p, and we'd do anything to have him back, but some children don't get to go home.
"Without Demelza, people like us would have nowhere to go. They were perfect."
The brave mum says her little boy was a fighter from the very beginning, having been born on September 29, 2015, at the abortion limit of 26 weeks.
Ali said: "When he was born he had to be resuscitated and was on a ventilator for 16 days.
"He did really well. We got him home the week before Christmas and we kind of started to enjoy life.
"Then in April 2016 he just started to develop pin prick marks on his skin. Being a nurse I thought it could be clotting.
"They initially thought it could be a viral rash, but then it starting getting worse with lumps.
"We were worried about him."
The Farbraces want to keep their son's legacy alive. Photo / Mercury Press
After being admitted to Great Ormond Street Hospital in April 2016, Ali said doctors investigated the possibilities of Daniel having so-called 'blueberry muffin syndrome' due to the marks on his skin, as well as leukaemia and neuroblastoma.
The heartbroken parents were told their son had leukaemia on April 19 - on dad Dan's birthday - with an official diagnosis of the illness on April 21.
Ali said: "It was unusual because the leukaemia was presenting as something else.
"They told us it was treatable, they gave him a 68 to 72 per cent chance he would survive.
"It was just awful. Everything gets taken out of your hands. We just wanted out baby. But Daniel was still smiling."
After four courses of chemotherapy Ali says Daniel was pulling through and even got home for his first birthday.
But just seven months later, in April 2017, Ali says they were devastated to discover the leukaemia had returned, and that Daniel had also developed a lump in his brain.
Despite numerous chemotherapy treatments to tackle the AML that was now in his blood and bone marrow, Daniel tragically contracted parainfluenza in June 2017, and was unable to fight off the infection, spending nine days on life support before he passed away.
The Farbraces want to keep their son's legacy alive. Photo / Mercury Press
Ali said: "We always knew if it were to come back it was likely to be in the first two years.
"We couldn't believe we were going through this again. I knew really we were never bringing him back. It was stacking up against him.
"But he was always happy and always smiling. I know it sounds crazy, but he never really seemed that unwell. When he was sick he was just quiet."
And now Ali says she and Dan, a bomb disposal engineer for the Royal Engineers, want to keep their son's legacy alive by raising awareness about blood and bone marrow donation.
Ali said: "At his funeral, everyone was upset and crying, but I didn't want to dishonour Daniel. He never cried.
"He was amazing, he was such a joy. We just want to remember him as a happy, beautiful little boy. Before him everything was so busy, but he made me stop and look around.
"He's helped to raise over £25,000 for charity so far.
"We just want to get the message out about donating blood and bone marrow transplant now.
"Sometimes Daniel had to wait 12 hours for transfusions. But he would have died a long time ago if it hadn't have been for donors.
