Heartbreak as two-year-old with incredibly rare condition dies five days before Christmas

A family has shared their grief after losing their two-year-old son to a condition so rare, it does not have a name yet. Their son, Reuben, was born with a condition that caused brain deterioration and seizures. Despite there being only 20 recorded cases worldwide, it is the same condition that Reuben and his brothers' older sister, Olivia, died from nine years ago.

Sadly, Reuben passed away just five days before Christmas, at the age of 27 months. Now, his eight-year-old brother, Harry, has pledged to climb the three Yorkshire Peaks in Reuben’s memory - and to raise more money for the charities who have supported his family.

Speaking about her son's passing, Mum, Sophie, 30, said: "After we told Harry, he came into Reuben’s room and immediately climbed into bed with his little brother and started singing to him and stroking his head. I was there looking at my boys, my heart breaking for them. Tears were running down my face and I had to bite my tongue to stop myself from wailing and ruining that moment.

"After about 10 minutes, Harry came off the bed, looked out of the window and said, 'I’m going to climb a mountain for Reuben. He knows that Sean and I climbed the three national peaks in his sister Olivia’s memory, and he really wanted to do something positive like that for Reu Reu too."

"We've had extremely tough days following Reuben's passing and Harry has astonished us with his strength," shared Sophie, who recently spoke to Wiltshire Live. "When we said our last good byes, Harry drew a picture of Reuben smiling, and told us, 'we’re sad but Reuben is happy because he’s free.'

"Harry wasn't just Reuben's brother, he was also a fantastic young carer," said Sophie. "When Reuben had a seizure, he would hold his oxygen and tell him, 'it’s okay Reu Reu.' It all came so naturally to him and Reuben was always so happy in the arms of his big brother."

Eight-year-old Harry Byrne raised an incredible £38k for charity last year, with his seriously ill little brother by his side. Now the 'fantastic young carer' is determined to continue his efforts with his climb of the three Yorkshire Peaks.

Along with his mum Sophie, dad Sean and one-year-old brother Felix, Harry will scale more than 7,000ft over three days on his Yorkshire Peaks challenge, from April 11. The inspiring family hope to raise funds and awareness forJulia’s House children’s hospicein Wiltshire andNaomi House & Jacksplacein Hampshire, plus four other charities who have been there when they needed them most.

Heartbreak as two-year-old with incredibly rare condition dies five days before Christmas

Last year, Harry captured the nation’s hearts when he took on several fundraising challenges for Julia’s House and Naomi House & Jacksplace, who have provided regular care and respite for the family in their home and at the charity’s hospices.

With the help of his friends and the local community, the St Michael’s Primary School pupil completed a 'Race Around the Moon' distance challenge and a 'Hospice to Hospice' hike – his fundraising efforts earning the attention of national media, with the family appearing on the Russell Howard Hour.

By taking on the three peaks of Pen-y-ghent (2,227 ft), Whernside (2415 ft) and Ingleborough (2,372ft), Harry and his family hope to raise £5,000 for the charities that have supported them and continue to do so: Julia’s House children’s hospice, Naomi House & Jacksplace, Ronald McDonald’s House, Saffa, Sandcastle Trust and Royal Artillery Charitable Fund.

Sophie said, “Reuben fought through challenge after challenge and he always managed to smile. That rubs off on you, how resilient he was. I feel like all the miles we walked and taking on this new three peaks challenge is nothing in comparison to what Reuben went through."

She added: "Reuben taught us all to live in the moment and enjoy the simple things in life. Just holding his hand would make him happy. He didn’t need much – just love and care. I think there’s a lot we can all learn from that."

Julia’s House Sibling Worker, Tracey Griffin, continues to visit Harry at home regularly, supporting him by being a person that is there just for him. Tracey said: "Harry is an incredibly caring young person and you can’t fail to be inspired by his energy and compassion for other people. We’re so very thankful to Harry and his wonderful family for once again fundraising for the seriously ill children and families that we care for, and we wish them all the best in their special three peaks challenge in memory of Reuben."

Peter Abrahams, Head of Supporter Services, Naomi House & Jacksplace, said: "Harry is an inspiration to me, and to all of us and Naomi House & Jacksplace. His determination, courage and commitment motivated people from across the UK to get involved and support him in his recent challenge to 'Race Around the Moon.'

"The money Harry raises helps to make a real difference to the families who use our services. Our hospices support life limited and life threatened children and young adults, as well as their families. Once again, Harry has set the bar high with an amazing fundraising adventure! Harry, we’ll be cheering you along on every step of the way!"

Support Harry and families of life-limited children, by making a donation at theirJustGiving page.

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