Grandad 'so proud' of Braveheart County Durham teenager with genetic condition who tried to help save his mum
by Sam Volpe · ChronicleLiveAll of the children and teenagers to be named Brave Hearts last week have been through huge trauma, but young Edward Muncaster has been through more than most.
The Stanley lad, 13, has Alagille syndrome, a life-limiting genetic disorder that affects the liver, heart and other organs and this means he is often tired and has had a range of serious operations, including on his heart. He inherited this from his mum, Rebecca - and heartbreakingly Edward was there when she died suddenly aged just 34, on April 1 this year.
Edward helped call for an ambulance and his grandad said he was incredibly proud of him - and that he even often checks how his grandparents are coping with the unimaginable loss they have all been through. And that's not to mention Edward's own health issues, which sees him face some complex challenges.
Speaking after the Brave Hearts ceremony, grandad Derek Muncaster joined Edward and told ChronicleLive about a devastating year. Derek said: "Earlier this year, Edward's mum passed away.
"He phoned the ambulance. Rebecca was just 34. Edward helped put the dogs away - he was just fantastic. He said thank you very much to the paramedics, even, for doing their best. I'm so proud of him, he's such a brave lad."
Edward himself told ChronicleLive how the Brave Hearts ceremony had been "lovely" and he was proud of himself, too. Impeccably polite, he explained how he enjoyed school - and how lots of his friends would often support him to enjoy lessons such as PE, as though he can become tired quickly, he does not let that stop him enjoying himself.
At the Brave Hearts ceremony, presenter - and former BBC figure - Jim Knight spoke about each of the children receiving the award. About Edward, he said: "He has spent a significant amount of time in hospital and even now his day to day living and well-being is constantly affected. However, Edward never complains, and is polite and considerate to everyone he meets. He has displayed amazing courage especially when faced with his mum’s sudden death last April.
"He was a fantastic support to his grandfather and was selfless in donating all the money raised in his mum’s memory to the Freeman heart unit. I am told that Edward is a delight to know and we are sure his Mum would be extremely proud of him as we present this incredible young man with a very well-deserved Braveheart award."
The Brave Hearts awards are given twice yearly to children who are nominated by the health and care staff who look after them. Each youngster has, according to the award organisers at charity Brave Hearts of the North East, demontstrated "inspirational courage and strength in battling illness or adversity".
At a glitzy ceremony at St James' Park, North East personalities paralympian Josef Craig and newsreader Carol Malia were joined by members of the Newcastle United women's football team to present the awards. Each youngster also receives a gift in honour of their bravery - along with a short break with their family.
For Edward, his gift was a curved gaming monitor as he enjoys playing video games, not least as it helps him to stay in touch with friends.
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