'I've brought my little boy back from the dead more times than I can count', says brave Milton Keynes mum

But sadly, Danielle Prior knows three-year-old Ethan only has 15 months maximum left to live – and she is determined to make every minute count for him.

Born seemingly normal and healthy, Ethan was, by the age of 10 months, a happy, giggly baby who was starting to walk, talk and feed himself But then single mum Danielle began noticing some disturbing changes…

"He stopped being verbal and his physical skills starting declining. I went to the doctor, thinking it could be autism of something, and was just told to wait and see how he developed,” she said.

“By the age of 18 months, Ethan was losing the ability to sit, feed, crawl and play. “I went back to the doctors, only to be told I was a hypochondriac!”

Just after his second birthday, doctors performed a brain scan, which discovered the devastating truth. Ethan was one of only 10 children each year to be diagnosed with Battens CLN1, a serious neurological disease that progressively takes away all bodily functions.

Children with the disease rarely live past the age of five. Ethan will be four this June,

"His brain doesn’t send signals to his body. He is tube fed, in a wheelchair and reliant upon oxygen. I have so much equipment for him that my house is like a mini hospital,” said Danielle, who is 39.

For the past three months, the tot has been so poorly that she has been unable to leave her Bletchely home apart from the daily school run with her older son, six-year-old Logan.

The most scary symptom is that Ethan regularly forgets to breathe and needs constant monitoring.

"I have a hospital grade breathing monitor but usually I sense he’s stopped breathing even before that goes off. Within seconds he goes grey and his lips go blue,” she said.

"I’ve learned to do CPR and, goodness, each time I’ve been able to bring him back. It’s terrifying, but I just go on autopilot.”

Sometimes Ethan “dies” every day or sometimes it happens once a week. On one scray day he stopped breathing six times and was revived each time.

"I’ve actually lost count of the amount of times I’ve brought him back from the dead,” said Danielle, who has vowed to make as many precious memories as possible before her son takes his final breath.

“I know there’s not much time,” she said. Last year I managed to take both boys to Disneyland and a chairty also paid for us to spend a magical Christmas at Centre Parcs in case it was Ethan’s last.

"I’m so pleased we did, as we’re virtually housebound now because of all the care and equipment he needs.”

Meanwhile, Danielle worries about the effect that Ethan’s illness and inevitable death will have upon his brother Logan. For this reason she is writing a special book, a journal of grief for children, and intends to self-publish it soon on Amazon.

She is no stranger to writing, having already published a book called The Magic Button, which explains PEG tube feeding in a non-scary way to children.

You can buy the book on Amazon here.