Six-year-old Harry has taken on a 45 mile hospice to hospice hiking challenge to raise money for Julia's House and the other children's hospices that look after his seriously ill little brother.
Harry Byrne will walk the distance between our hospice in Devizes, Wiltshire, and Naomi House & Jacksplace hospices in Hampshire to raise vital funds. Our nurses and carers provide clinical and respite care for Harry’s family and his one-year-old brother Reuben, who was born with an extremely rare and life-limiting condition that causes brain damage.
Because of lockdown rules, Harry will walk loops around his local area of Larkhill, Salisbury, to achieve his 45 mile goal. He aims to cover 15 miles a day over three days this weekend. Dad Sean will join him for the full challenge, with mum Sophie and little brother Reuben taking part where they can.
Harry’s mum Sophie said, “The challenge was Harry’s idea – he told me he wanted to raise money for the charities that look after his poorly brother.
“Originally he wanted to swim with sharks but we managed to talk him out of that and he’s settled on the hospice to hospice hike. He’s been jumping with joy at the support he’s had so far and can’t wait.”
She said, “45 miles is a big distance for a six-year-old, but Harry’s got incredible stamina and just loves being outdoors. Reuben’s condition means that he can have up to 10 seizures a day when he just stops breathing, so I don’t drive on my own with him often and walk several miles a day to take Harry to school."
Already, the St Michael’s C of E Primary School pupil has exceeded his target, raising more than £1,800 online so far.
The family sadly lost Harry’s older sister Olivia eight years ago to the same condition that Reuben was born with – so rare that it doesn't have a name and there are only 17 recorded cases worldwide. She was just eight months old when she died and because doctors are still learning about the condition, the family were told that ‘lightning wouldn’t strike twice’.
“No matter how strong you are, it’s not until you’re put in a position like ours that you realise how fundamental children’s hospices like Julia’s House are for your wellbeing and to help you make those memories as a family,” Sophie said.
“Reuben has such complex needs that he can’t be looked after by anyone that’s not trained. So when the Julia’s House nurses come into our home so full of energy, it gives us peace of mind that Reuben is in safe hands and getting that extra love and care while we spend quality Mummy and Daddy time with Harry. The sibling workers at Julia’s House also take Harry out for a play just on his own too, which he absolutely loves.”
Nicky Clack, Wiltshire Fundraising Assistant at Julia’s House, said, “Harry is a superhero in our eyes and an incredibly caring big brother. The money Harry’s raised so far will help to provide vital hours of clinical care, emotional support and respite to families with seriously ill children like Reuben.
“We’re entirely reliant on public funding in Wiltshire to provide our life-changing care in the community, so we can’t thank Harry enough for the difference he’s making and wish him the best of luck in his hospice to hospice challenge.”