The family of a brave boy battling an extremely rare condition is preparing to celebrate his tenth birthday - after doctors said he wouldn't live past two hours.
Milo Browne, from North Shields, suffers from a rare degenerative condition so unique it is known only as M3BHA and he is thought to be the oldest known case in the world. It has only ever affected around 10 other people in the world and most children with this condition do not live past two years.
The condition causes Milo to suffer from constant seizures, any of which could be fatal, as well as respiratory problems. He is unable to talk or eat, sit or stand without being fully supported meaning he needs 24-hour care. Sadly, his condition has continued to deteriorate and he is now on 24-hour oxygen.
However, despite the odds, Milo, who was born blind, has left doctors baffled and is now preparing to celebrate his tenth birthday on June 3. And to celebrate his huge milestone, his mum and dad Stephen Browne and Laura Davidson are appealing for strangers to send him a birthday card.
Stephen said the milestone is "huge" and said they are "blessed" to have been able to have ten years with Milo. He said: "When Milo turned five, that was just amazing for us and now he's doubled that milestone. Even before he was born, we were told we wouldn't even get two hours with him and that he might even be stillborn.
"He's believed to be the oldest child with this condition, all the other children sadly died by the age of two. We may never know why his seizures are the way they are but we've been blessed with Milo for almost 10 years and we'd love for him to receive lots of birthday cards.
"We should be grateful for the amount of time we have had with him and we are, but as a parent, you never want your child not to be here, we never want that day to come. We can't do much for Milo but we always think, could we do more, what else can we do?"
Sadly Milo's condition continues to deteriorate and the parents have been told he will let them know when he is ready which Stephen said will "haunt them forever".
He said: "Milo is on 24-hour oxygen now, they hope it will stop him from declining quickly. His heart is working so hard and that is what they're most concerned about. The consultant said we have given him the best life and he's here now because of us and the love we give to him.
"The consultant said no parent should have to make the decision but that Milo will let us know when it's time. We've known from day one that the day would come but you're always hoping and praying he'll keep proving people wrong. Any seizure he has could be fatal so he's winning the lottery every single moment he's alive."
His parents are proud as punch with his inspirational spirit and said he continues to amaze them by how he "never gives up". They said the brave little lad "inspires everyone he meets".
Stephen said: "Milo has changed our perspective on life. Everyone who meets him is inspired by him. He's always smiling and he must be in so much pain but he still finds the strength to smile. He is such a fighter and he's such a happy boy."
While there is no cure for the condition, the parents hope by sharing Milo's strength and determination with the world they can help inspire others. They also hope to finally fulfil their dream of buying an adapted caravan fit for families with children who may have complex needs like Milo.
Stephen added: "We're nothing special, we're just parents who have been dealt a really bad card with their son and we can't stop what's going to happen but we can try to help others and do our best for our kids. We will still be here carrying on his legacy."
To celebrate Milo's tenth birthday, the family is holding a fun day on June 18 to mark the milestone and to help raise funds for Mission Milo. There will be raffles, games, and stalls with plenty of fun activities for children. Stephen said: "We would love it if people came to meet Milo and celebrate his tenth birthday with us. It's something we never thought would happen."
The family would like to thank Infinity Fitness NE which hosted an event on May 22 and raised more than £1,000.
If you would like to send a card, send it to: Milo Browne, 144 Waterville Road, North Shields, NE29 6BL. If you would like to donate to the family's cause, you can do so here. You can also follow Milo's journey here.
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