A family has spoken of their agony after bringing their boy with a rare condition home to die.
Milo Browne, from North Shields, suffers from a rare degenerative condition so unique it is known only as M3BHA and there is no diagnosis.
The condition causes Milo to suffer from seizure and respiratory problems and he is unable to talk or eat, sit or stand without being fully supported meaning he needs 24-hour care.
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Sadly, Milo's health declined towards the end of last year and his family faced difficult conversations as they fought to keep him alive.
The little fighter defied the odds but his mum and dad, Stephen Browne and Laura Davidson, have been told the time they have left with them is limited.
The couple made the difficult decision that they didn't want Milo to die in hospital and have instead brought him home so they can make as many memories as possible with him.
Stephen said: "Milo definitely has a guardian angel. When they say not many children come back from that level of support, no child has come back.
"We had long conversations about what we were wanting to do. We wanted Milo home rather than in the hospital. We want to spend whatever time we have left together."
Milo is on palliative care and will be looked after by his parents.
Stephen added: "We are going to have to decide at some point when his medication will be increased and he will go to sleep for the last time.
"Milo has so much more to give. We will always care and support him as his parents.
"He will continue to laugh and smile which is one thing he will continue to do until his last day."
Stephen and Laura, who also have Fox, three, Felix, 11, and Mia, 15, are now focused on spending what precious time they have left with Milo.
Stephen said: "We had a plan many years ago to get married because we wanted Milo to see us walking down the aisle. He is never going to see us walk down the aisle, he's never going to go abroad, to a George Ezra or Ed Sheeran concert.
"But making memories for us is the little things like seeing him smile everyday. We want to be optimistic and plan something in four weeks but four weeks is a long time."
Stephen said the reality of life without Milo is hard to face. He said: "I have never been able to think of a day without him because I can't see my life without him."
Milo has touched the hearts of thousands of people as his parents share his journey on social media.
Stephen added: "For us, we want people to remember as a smiling boy no matter how bad the days are. On the days when he is struggling more, that is when the happier days become more precious."
Over the years the family has become known for their kind hearts by donating Christmas gifts to sick children every year and raising money to buy a caravan where families with disabled and terminally ill children can visit.
Now, a family friend has organised a fundraising campaign that will help take the pressure off the family while they care for Milo.
Writing on the GoFundMe campaign, Emma Armstrong said: "This year has already been and is going to be the toughest on them knowing that their son is going to die.
"I just want to be able to help and take some of the pressure off while they take care of their critically Ill son without having to worry about money and bills and other things for after he has gone.
"He’s been a huge inspiration to many people, and Stephen and Laura are always the first people to help others in any way they can, myself included when I needed to raise money for my daughter's epilepsy monitoring equipment.
"They have collected and donated presents to the hospital three years running as well as supplying much needed personal care items to the heart unit at the Freeman hospital. I think they deserve a rest and for us to repay their kindness for a change."
To donate to the fundraising campaign, visit here
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