The distressed parents of a "loving" boy revealed his agony when he discovered that perhaps he was only three weeks old to live after his deadly son "was lost."
Little Evie Mitchell, who is almost two years old, had a tumor growing in the brain during the past year, but only doctors found him a few weeks ago.
His parents "absolutely terrified" Lauren Jenkins and Alfie Mitchell, from Cornwall, told him that he could only live for three weeks if he had no immediate surgery.
Mum Lauren believes that she should have been seen before since Evie has been closely monitored by healthcare professionals in the last 15 months, Cornwall Live reported.
She says that, despite Evie being constantly "floppy" and unable to move her limbs, she was never given a magnetic resonance scan that could identify the growing brain tumor.
The 25-year-old boy feels she and Alfie, both from Cornwall, have been flawed by the Royal Cornwall Hospital in Treliske and pray for her daughter to go.
Lauren said that she and Evie traveled to the Bristol Children's Hospital for a planned gastrostomy operation – to insert a feeding device into her baby's stomach – a couple of weeks ago, but during her previous assessment the staff became worried.
She said: "She entered a pre-op and noticed that her oxygen levels were quite low and they did more tests because she had a delay in development and had problems with weight loss.
"She also has a chromosomal abnormality that is what they thought was causing problems. They did the tests and were not happy yet and they thought something was wrong because she was in a paralyzed state and did not move the limbs.
"They did a magnetic resonance analysis and then they took me to a room to tell me that they have a tumor in the last stage and 98% are in the cerebral stem with a little on the upper part of the spine.
"He had a lot of admission to Treliske and two admissions because of his extreme weight loss and acid reflux. He was in the Gwithian unit for eight to ten weeks of stay and had regular appointments.
"She had other problems such as extreme vomiting and the delay in development, but this tumor was allowed to grow for a year, despite having intense contributions from healthcare professionals.
"There were many people in the community and many people in the hospital involved in their care and many people could not investigate anymore. He sat leaned and holding his head up and all when he was younger – then he stopped because obviously the tumor was growing.
"I saw so many people in Cornwall and looked at us here (in Bristol) and said:" We will do a magnetic resonance. "They told us that without an emergency treatment, it will take three weeks to live.
"Now we are at the risk of losing our son when we arrive here for a relatively normal operation. I can not put in words the devastating thing that we are."
Lauren says that a month before the discovery of the brain tumor of her daughter, her hospital consultant referred to a community pediatrician because she was starting to progress.
"We can not believe the situation we are in," he added.
"I do not understand how this was overlooked. We had people on the top of the game and never thought about investigating their symptoms.
"And now it has a tumor on the stage in which it does not even want to operate because it is so large. We are really angry and we want people to know. It's not like they found a small tumor – it has grown for a year.
"They have never done a MoT or something as small as a magnetic resonance and put them in this situation. Now we have two options and they will have to do a biopsy and try what it is or can go and try to eliminate it but it is incredibly big and in the worst place that could to be
"This team has put all of these surgeons in a compromising situation with a very large tumor in the worst place and are having to talk to other hospitals to ask what to do.
"If our local hospital had done a magnetic resonance only three months ago and we could have another three months with Evie.
"If you did not have as much information it would be different, but it had 20 professionals involved in your care. She was so forgotten and our family and friends are also devastated.
"There are no words to summarize what we feel. The team here is in serious turmoil because they do not know what to do and they are angry; they are not used to doing a magnetic resonance scan and finding such a tumor.
"She had an emergency surgery to reduce the fluid in her brain. We put all our confidence in that hospital and failed.
"We are very grateful that we arrived when we did. More time and probably would not be here. It's very tough, bless your heart – she's been living with this and I do not know how she's alive.
"She's an amazing girl and she wants to be here. It's pretty bubble though she can not talk or walk. She's really affectionate. She's our daughter, so we're going to be partial, but she's like that.
"She is so good, especially considering that she must be with so much pain."
Lauren added: "We are scared. All we do is for her. She is my only daughter and I ask God not to lose her.
"We have already baptized you yesterday and we were quite rushed because we thought they were going to operate but were not sure how to operate. They do not want to make massive decisions.
"We are really upset and disappointed. They did everything apart from a magnetic resonance imaging and all the indicators that were there. We can never take our daughter to that hospital if she does and ask her to do so.
"It's too much for the brain. It's hard to reach an agreement. I do not even want to go back to Cornwall. It's my home, but I do not even want to go back. The support was amazing." Thank you to our friends and family. "
A spokesman for the Royal Cornwall Hospitals Trust said: "We are in contact with the team at Bristol Children's Hospital taking care of Evie and our thoughts are very good with Evie's parents in such anguishing and distressing moment.
"It is impossible to say without a detailed review of the quotations and clinical history of Evie, which we will carry out, if you missed the opportunity to diagnose your condition.
"We will make an arrangement to meet Evie's parents as soon as they can talk to us, so we can get Evie's attention with them and answer all the questions they may have."
If you want to donate, visit the Evie Just Giving page here.