The Yorkshire boy whose bones are like glass and could break with a hug

Kieran Dube, six, who suffers from a rare form of brittle bone diseaseKieran Dube, six, who suffers from a rare form of brittle bone disease
Kieran Dube, six, who suffers from a rare form of brittle bone disease
Kieran Dube’s bones are so brittle that a fall could break his back. But it doesn’t stop him raising money for the hospital that helps him. Catherine Scott reports.

A one-and-half mile sponsored walk for your local hospital might not sound like a great challenge, but when tripping and falling could shatter your bones then it is.

That is the case for six-year-old Kieran Dube who suffers from a rare form of brittle bone disease.

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Kieran, from Scarborough, has had more than 20 broken and fractured bones in his short life so far. He cannot play football or go on a bouncy castle like other children – as a bad fall could be life-changing.

Kieran with his little brother Christian, four and big brother Ryan 11.Kieran with his little brother Christian, four and big brother Ryan 11.
Kieran with his little brother Christian, four and big brother Ryan 11.

“If he fell he could break his back which could leave him paralysed,” says his mum Rachel.

Kieran suffers from type five osteogenesis imperfecta (OI).

“OI is rare but the type Kieran has is even rarer,” says his mum.

He was first diagnosed when he was just seven months old.

LtoR Christain, 4, mum Rachel, dad Sani, Kieran, six and Ryan 11LtoR Christain, 4, mum Rachel, dad Sani, Kieran, six and Ryan 11
LtoR Christain, 4, mum Rachel, dad Sani, Kieran, six and Ryan 11

Rachel says she had a ‘perfect’ pregnancy but labour lasted just 28 minutes and as a result Kieran had to spend 11 days in the special care baby unit at Scarborough Hospitals.

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When he was allowed home Rachel and his dad Sani were still concerned about his development, although doctors said they could find nothing wrong with him.

“Kieran was unable to lift his head up,” recalls Rachel. “His older brother Ryan was five at the time and so I knew the milestones he should be hitting.”

Then one day they notice Kieran had stopped using one of his arms as he lay on his baby mat. Doctors tested him for rickets and other illnesses but could fine nothing obvious. In the end he was transferred to Sheffield Children’s Hospital where there is a specialist Metabolic Bone Disease Service.

Further tests revealed that Kieran was suffering from OI.

The condition, which mainly affects his elbows, means that even something as minor as a hug could break Kieran’s bones.

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“Neither me nor Kieran’s dad are carriers for OI, it was just a genetic mutation. Neither Ryan nor his little brother Christian have the condition. When he was diagnosed we felt like someone had handed him a death sentence. We were told our little boy may never walk or go to a mainstream school, due to 
the level of his physical 

“His bones are like glass, if he falls, they break but thankfully that is becoming less frequent, although we have been warned it could get worse as he gets older.”

But Kieran defied the worst predictions and was walking by 14 months and now attend mainstream St George’s Catholic Primary School, where Rachel works.

“The school have been fantastic, they know he cannot play football or even run with the other children. The teachers are aware of the risks for Kieran. But he is such a bright boy and makes up for what he can’t do with his smiles and personality.”

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For the last few years the family has done sponsored events for the Brittle Bone Society in May but due to Covid it was cancelled.

So as soon as lockdown restrictions were lifted Kieran decided he wanted to do something for the unit that helps him. On Monday Kieran walked the one-and-a-half miles from Scarborough Spa to The Sands in his hometown. All the money raised for The Children’s Hospital Charity will support the Medical Daycare department at Sheffield Children’s.

“We’d love to raise as much as we can and give something back to the ward which has helped us so much,” says Rachel.

Sheffield Children’s are known internationally for the treatment of osteogenesis imperfecta. Children come from all over the UK and around the world to see clinicians who are highly respected in their fields while the Metabolic Bone Disease Service is the largest of its kind in Western Europe.

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For the past four years, Kieran has visited Medical Daycare at Sheffield Children’s every three months for infusions with doses of zoledronic acid to help protect his bones.

“We have to leave the house at 5.30am to get to Sheffield for 8.30am and then we get back at about 7.30pm. It is a 180-mile trip but they are like our second family,” says Rachel.

“The staff are amazing with Kieran and know how to support him. They are great at talking to him as well as me, explaining everything they are going to do, how things work and are always happy to answer his questions.”

Lucy Rathbone, regional fundraiser at The Children’s Hospital Charity added: “Kieran’s determination to overcome the challenges he has faced so far in his life is inspiring.

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“We’re so grateful to him and his family for taking on this sponsored walk to help Sheffield Children’s, in recognition of the care he continues to receive. We’ll be behind them every step of the way.”

And for Kieran, who has an obsession with buses, the event went really well.

“He has always been supported by the local bus companies and all the bus drivers know him and popped some money in his bucket and hooted their horns,” says Rachel. “Whenever he gets upset at not being able to do things like the other children, we just talk to him about buses and it lifts his spirits.”

Like other six-year-old he loves the computer game Minecraft. He is fascinated by space, and is a fan of the singer Anastasia.

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Rachel says she does get frustrated when people don’t realise that Kieran has a disability as he looks fine. “He does have a wheelchair now which he uses if he gets tired but the rest of the time he looks fine.

“There is no cure for OI and we have been warned as he gets older he could get worse, but there are people, even some television personalities who have made careers for themselves and have the same condition as Kieran – but he just wants to be a bus driver.”

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