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Kieran’s osteogenesis imperfecta story

26 March 2019

Five-year-old Kieran never tires of asking questions, within two minutes of being seen at his appointment on Medical Daycare, he’d asked his nurse what every single piece of equipment was called and what it does.

Kieran now knows a lot about Sheffield Children’s, having started visiting the hospital when he was just seven months old.

Kieran wasn’t meeting the typical milestones expected by his local hospital and when he stopped using one of his arms, he was referred to Sheffield Children’s where he was diagnosed with osteogenesis imperfecta (OI).

His mum, Rachel, said: “It was a genetic mutation; his dad and I aren’t carriers for OI so it was just pot luck.”

Since being diagnosed, Kieran has been coming to Sheffield from Scarborough every three months with his family to have treatment.

His mum added: “We come to Sheffield Children’s for the specialist treatment. They are like our second family. We see Amy and Martha in Medical Daycare every time we’re here. Even though they have a million things to do, they’ll find five minutes for Kieran. I couldn’t fault them.”

Having osteogenesis imperfecta – also known as “brittle bones” – means that Kieran’s bones can break or fracture easily, which does restrict part of his family life but doesn’t stop him doing his favourite activity, riding the bus.

Rachel explains: “We don’t want him to miss out. We have three boys and if two of them want to go trampolining or something physical, then Kieran and I will do a bus day. We’ll take the local one into town and then he’ll pick a bus and we’ll ride it all the way round. Then he’ll pick another, last time we fit eight bus rides in.”

If you would like to keep up to date with Kieran’s latest bus adventures by following Kieran’s osteogenesis imperfecta story on Facebook, a page run by his mum.

Sheffield Children’s is a world-class metabolic bone disease service which sees children from all over the UK with a wide range of conditions including osteogenesis imperfecta, osteoporsis, and recurrent fractures. Treatments include appropriate occupational and physiotherapy, orthotics and referral to specialist surgical services (typically orthopaedic, neurosurgical and dental). Find out more about the metabolic bone disease service.

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