Brierfield dad to cycle 350 miles for children’s hospital
Paul Cunliffe’s son, Samuel, has a rare condition called branchiootorenal syndrome (BOR), a birth defect which affects the development of tissues in the neck and causes malformations of the ears and kidneys.
The condition means he has hearing difficulties and needs to wear bone conductors. He also had to get a new kidney in 2019.
Paul, who donated the kidney, said: “We knew from birth and the scans that he had the condition but didn’t know to what extent.
“He has been affected by all types of conditions throughout his life and developed peritonitis while on dialysis.
“It is just ongoing and it feels like he has faced every type of problem that someone in his condition can get.”
Samuel, aged eight, also has epiphyseal dysplasia – a disorder of cartilage and bone development.
Paul said: “We noticed when he was growing up that there were problems with his walking development.
“Once he started walking he regressed backwards to crawling.
“It turns out he has this condition that affects the ends of his bones.
“He basically has arthritis. He has the hips of an 80-year-old and needs walking aids to get around.”
Paul said this life is all Samuel has ever known, admitting that it can be hard for him and his mum at times.
He said: “Samuel doesn’t know any different.
“It is stressful for us and it can be difficult and heartbreaking to watch him from the sidelines, unable to join in with his friends – but it doesn’t bother him.”
On August 29, Paul is set to undergo a four-day cycle from St Austel in Cornwall to Burnley, hoping to raise funds for Alder Hey.
He said: “The staff at Alder Hey take everything in their stride. They look after children there so well. They go above and beyond.
“Nothing is too much trouble for them and it is just a phenomenal place to be.
“If anyone wants to help me to service my bike between Cornwall and Burnley, the help would be much appreciated.”
Paul and the family will also be hosting a ‘family fun day’ at St Peter’s Centre, on August 27, to raise even more money for Alder Hey.
A princess party business founded by TikTok’s Lauren Saddinton will be there.
Paul said: “We will have live entertainment, a large bouncy castle for the kids to enjoy, More Than Just A Princes will be there, for both the morning and afternoon slot for meet and greets with your very own princess!
“Brierfield Children’s Allotments will be there with crafting, planting and wood brick activities. We have lots of stalls, games and food for you all to enjoy.
“There will also be a huge raffle. If you have any prizes you wish to donate to the raffle please get in touch.”