Battling Milo Browne has had a “horrible” start to 2025 – while his parents, Stephen and Laura, have been fighting “around the clock” to keep the youngster, who has lived with an incredibly rare health condition since birth, alive.
Milo, now 12, has a degenerative condition that is so unique it is known only as M3BHA. When it was diagnosed – at birth – his family were told to expect the worst, and quickly.
The condition has affected barely a handful of people – thought to be around 12 – and most youngsters with it have not made their second birthday. As such, the North Shields’ lad’s continual survival has baffled medics.
The condition causes Milo to suffer from seizures and respiratory problems and he is unable to talk or eat, sit or stand without being fully supported, so he needs 24 hour care.
Despite a tough start to the year, dad Stephen told ChronicleLive how he and Laura had worked tirelessly “like a crash team” to keep him going over the past days as he struggles with the complications of his condition. He can be prone to infections and seizures – but his dad says he is still fighting and that in recent days he has needed morphine and rescue medication, along with the usual constant care from his parents.
Stephen said: “Milo was discharged from hospital in January 2023. We brought him home to ‘make the most of the last few days’. Maybe we’d have up to a week. Fast-forward two years, and as I always say, he’s still fighting. It just goes to show his strength is unquantifiable, to say the least.”
In the last few years, the family’s love for superheroes has seen them link up with the Monopoly events team behind Comic Con and they’ve been able to meet acting stars like Sebastian Stan and Brandon Routh, who have both played superheroes. Stephen said that telling the latter actor Milo’s story had moved him to tears.
“We had gone to Comic Con in Liverpool and met some celebrities like Sebastian Stan. We also met Superman – Brandon Routh. I was talking about Milo with him and it was a special moment. We said how he’s our hero. He was even crying and my daughter said she couldn’t believe I had made Superman cry….”
The family have used Comic Con events to help raise funds for Mission Milo – the long term aim is to provide a specially adapted caravan so that families with children who have extremely specialist needs like Milo have somewhere special to go for a break. The idea is to raise around £80,000.
The fundraising includes through the sale of craft items such as ornate origami models of characters from films and comics – made by Stephen himself while caring for Milo.
Stephen added that Christmas – and every milestone – was always difficult. He said: “Over Christmastime, yes we are aware it could be the last Christmas. But we are with every birthday, every Comic Con that goes by that it could be the last. We know that 12 months is a long time. Even in the last 24 hours, Milo has not been out of the woods.
“Fighting for Milo is our life, it’s what we do every day. In my heart and in my head, we know we have done and are doing everything in our power to keep him with us, for every [extra] hour and every [extra] day. And if we get an hour of sleep between us, that’s what we’ll do.”
He said he and Laura “drew strength” from all of their children, and that he felt Milo’s contribution to the world was “huge” and that the family was determined to ensure his impact continues to touch people all over the world.
Stephen added: “He has had twelve years of a life no-one said he would have had. We have worked around the clock in the last 24 hours to keep him here. It’s been a difficult 24 hours, but it’s been like this 12 years. I think the last two years in particular have brought the best out of Laura and I.
“For us it’s been a horrible start to a new year but it’s also a new year we potentially could never have had. When Milo meets anyone, they say how his smile puts your life into perspective.”
To find out more about Milo’s journey, follow updates on Facebook or visit the Mission Milo website.
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