Boy, 6, hikes 45 miles to raise money for hospices that care for his baby brother who suffers from a brain condition that took their sister’s life and is so rare it doesn’t have a name
- Harry Byrne, six, from Salisbury, walked the 45-mile distance over three days
- He raised money for two children’s hospices that look after his brother Reuben
- Has a condition that causes brain damage but is so rare it doesn’t have a name
- The family lost Harry’s older sister Olivia eight years ago to the same condition
A six-year-old boy has hiked 45 miles to raise money for two hospices that care for his baby brother who has a life-limiting condition.
Schoolboy Harry Byrne, of Salisbury, walked the distance over three days in honour of his one-year-old brother Reuben, who suffers from a condition that causes brain damage but is so rare it doesn’t have a name and only 16 people in the world are thought to have it.
Eight years ago, parents Sean and Sophie lost a daughter to the same condition.
Harry took on the challenge to raise money for Julia’s House children’s hospice, in Wiltshire, and Naomi House and Jacksplace in Wiltshire.
Harry Byrne (left) took on a 45-mile hiking challenge to raise money for the hospice that looks after his seriously ill baby brother Reuben (right)
Harry (pictured with Reuben) walked the distance between Julia’s House children’s hospice in Wiltshire and Naomi House & Jacksplace hospices in Hampshire to raise funds for both the charities
Harry reads to his younger brother Reuben who suffers from a rare and life-limiting brain condition. The condition is so rare that it doesn’t even have a name, the family say
‘Harry has experienced first-hand how these wonderful charities help and care for his brother, Reuben and support us as a family,’ parents Sean and Sophie wrote on the Virgin Giving page.
‘Reuben has an extremely rare but life limiting condition, a condition that Harry’s older sister Olivia, tragically passed away with eight years ago.’
Originally he had planned to walk the 45 miles between the two hospices but had to change the route due to lockdown.
Instead he remained in the local area and covered 15 miles a day, with his family supporting him along the way.
His father Sean joined him for the full challenge, while his mother Sophie and little brother Reuben took part where they could.
So far Harry has raised £8,456, which is much more than the family’s original target of £1,500. Reuben is pictured surrounded by sensory toys
Reuben’s needs are so complex that he can’t be looked after by anyone that’s not trained. He is pictured at the hospice
The nurses at the two hospices care for Harry’s one-year-old brother Reuben, who was born with a rare and life-limiting condition that causes brain damage (pictured together)
Harry had originally wanted to swim with sharks to raise the money but lockdown meant they decided on the hiking challenge instead.
Sophie told The Salisbury Journal: ‘The challenge was Harry’s idea – he told me he wanted to raise money for the charities that look after his poorly brother. He’s been jumping with joy at the support he’s had so far and can’t wait.
’45 miles is a big distance for a six-year-old, but Harry’s got incredible stamina and just loves being outdoors.
His father Sean joined him for the full challenge, while his mother Sophie and little brother Reuben took part where they could. Harry and Reuben are pictured together at Christmas
‘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.’
Speaking about the work that both the hospices do Sophie added: ‘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.’
So far Harry has raised £8,456, which is much more than the family’s original target of £1,500. To donate click here.
Harry (pictured) had originally wanted to swim with sharks to raise the money but lockdown meant they decided on the hiking challenge instead
Harry is pictured with Reuben and his father Sean, who accompanied him on the charity walk
The family lost Harry’s older sister Olivia eight years ago to the same condition that Reuben (pictured with father Sean) was born with