The boy with 'bones of glass'
A boy with bones “like glass” has inspired a fundraiser to give back to the charity that has supported him.
Four-year-old Kieran Dube damaged his ankle a few weeks ago – the latest of 13 broken or fractured bones so far in his short life, one requiring surgery. The youngster was diagnosed with a condition called Type V Osteogenesis Imperfecta, known as brittle bone disease, when he was just seven months old.
Mum Rachel Dube, of Eastfield, said: “His bones are like glass. If he falls, they break. When he was seven months old he
fractured his arm. At the time we’d noticed that he wasn’t using it so we took him to the doctors and were transferred to Sheffield children’s hospital.
“When he was diagnosed I thought ‘that’s it, life over’. But it really isn’t. We do worry and everything has to be very controlled. You want him to be able to play rough and tumble with his brothers but he can’t.
“When he was diagnosed we were told he may never walk. They didn’t know how it was going to affect him. With the help of the medication, the doctors and family, and of course Kieran’s determination, he took his first steps.”
Little accidents that normally a four-year-old would bounce straight back up from can have more severe consequences for Kieran, who attends the nursery at St George’s Primary School.
“He’s fallen off the sofa and broken his arm and bumped into the radiator and broken his collar bone,” said the 30-year-old mum. “Bouncy castles and trampolines are a no-go and he can’t play rough with his brothers, Ryan, aged 9, and Christian, who’s two.”
The youngster has type five Osteogenesis Imperfecta which mainly affects his elbows.
“He can’t touch his shoulders and when he breaks a bone in his body and it heals he produces too much extra bone which forms bumps,” Rachel said. “He also has a blue tinge to the whites of his eyes which is another symptom.”
But what the youngster lacks physically he makes up for mentally, and his curious and positive nature has made him a hit with the town’s bus drivers.
“He loves buses, he knows all the numbers in Scarborough,” said Rachel. “For what he can’t do physically, he makes up for. He’s naturally very inquisitive. He wants to know everything and if he asks you a question and you don’t know the answer he wants you to find out.”
The youngster was invited to visit the EYMS Hull depot during the Easter holidays as a number of the company’s bus drivers follow Kieran’s story online. “He wanted us to leave him there,” laughed his mum. “He wanted to live there – he would be quite happy.
“They took him round to see where they paint the buses and clean them. He loved it, he’s definitely going to be a bus driver when he grows up.”
There is no cure for brittle bone disease but with the right knowledge and treatment, Kieran can live a full life.
Every three months, Kieran attends the Sheffield hospital to receive a dose of Zoledronic acid which was first described to Rachel as like wrapping masking tape around his bones. Towards the end of the three months he gets really achy and tired and he loses his appetite. The treatment rejuvenates him, it gives him his zest for life back.”
Now his family are hosting a table top sale to raise money for Brittle Bone Society which has supported Kieran.
“When he was in the hospital he got a little treat bag from the society,” says Rachel. “There was a juice drink, a teddy bear and a backpack and they’re great for getting information and advice from.”
The table top sale will take place at the Sensory Playhouse, in The Alexandra Centre, 15-19 Falsgrave Road, on Sunday May 6 from noon to 2pm. So far Rachel has received donations from Mountain Warehouse, Edinburgh Woollen Mill, The Watch Hospital, Angie’s Ice Cream, John Paul’s Hairdressers, Auto Elixir car, Bridlington Leisure Centre, McDonald’s, The Body Shop and AJ’s Farm Shop.
Anyone who would like to book a table, for £5, can contact Rachel on 07450 741129.