Rare bone deformity confines boy to wheelchair

It is mid-morning in Lelgoi Village and several children are outside playing hide-and-seek or jumping rope.

But nine-year-old Edwin Kipchirchir is not among his peers who are playing near a dusty road, not far from their house.

Kipchirchir suffers from a rare condition, which has left him unable to walk and play like other children his age, and is confined to a wheelchair.

The rare condition identified by doctors as Osteogenesis Imperfecta, also known as brittle bone disease, has left Kipchirchir with rare flat and worryingly weak bones that easily break whenever he plays.

Seated on his wheelchair, he gazes pensively, only affording a smile as boys his age play a game of marbles, popularly known as bano.

Kipchirchir has never been to school owing to his condition.

This day, when The Standard visited his home, he is in pain after he fell down the previous day as he attempted to play with other children.

“I would wish to play with my friends but I fear I might break my hand or leg. Yesterday, a friend pushed my wheelchair badly and I fell off. My hand is now paining,” he says.

Kipchirchir who interacts more with doctors than his peers due to the rare deformity adds: “My friends tell me a lot of stories about school. I desire to go there and one day become a doctor to help people with conditions similar to mine.”

Single mother

His mother Anne Jepkorir is a distraught woman. She has lost count of the instances she has had to rush her son to Kapsabet County Referral Hospital after suffering fractures.

Ms Jepkorir, a single mother of six, says she has suffered stigma from neighbours and relatives who associate her son’s condition with a curse.

Jepkorir, 41, says her first born son, who recently turned 18, also has deformed hands, but notes that he is not badly off since he can discharge his duties normally.

“I was also born with an almost similar deformity but my bones became stronger as I grew older,” she explains.

Jepkorir is sad that her eight-month-old son is also affected with a similar deformity, on the chest.

She appealed for well-wishers to help her seek medical help for her son.

“Kipchirchir is a bright boy and desires to go to school. I am unable to take him for special bone procedures because I am struggling to feed my children,” says Jepkorir.

Salome Bartonjo, a neighbour who spotted Kipchirchir a month ago, said she was shocked at the nature of his deformity.

Mrs Bartonjo said she took the boy to a hospital in Eldoret and doctors said the deformity can expose his bones, putting him at risk of bone infections.

Bartonjo has registered Jepkorir and her children with National Hospital Insurance Fund, but the card is yet to be active. She, however, says she is not sure whether corrective surgery on the boy can be covered by the insurer.

Geoffrey Rotich, an Orthopaedician at St Lukes Orthopaedic and Trauma Hospital, said the condition is caused by defects in body protein called collagen, adding that the condition is genetic.

Dr Rotich said corrective surgery which encompasses rod implants can be carried out to straighten and strengthen the bones.