Teenager praises cutting-edge care for rare bone disorder

Share this article
Have your say

a teenager has told how she can live life to the full thanks to pioneering treatment at a Yorkshire hospital.

Holly Girven, now 17, was diagnosed with osteogenesis imperfecta, an inherited form of brittle bone disease, after she was born with a fractured arm and two breaks in her left leg.

Children affected by the condition have typically experienced hundreds of broken bones in childhood, and some have spent months in hospital. Breaks can happen for no reason, or after a stumble, or even a sneeze, and during her early years she suffered multiple fractures.

But thanks to cutting-edge treatment at Sheffield Children’s Hospital harnessing regular drug infusions, her bones have been strengthened and, remarkably, she has not experienced a fracture in 10 years.

The teenager, from Laughton, near Gainsborough in Lincolnshire, was one of the first children to have treatment aged just two. She now no longer needs the infusions and will in future receive treatment from experts running the adult service at the Northern General Hospital in Sheffield.

She said: “It has made a huge difference to my life, as thanks to the treatment I’ve received, I’m independent and I do all the things my friends do. I feel very grateful for that I was one of the first people to have this treatment and that it’s made such a difference to my life.”

She hopes to study law at university, swims for the East Midlands and drives to school, using a light-weight wheelchair to make her completely independent.

Her proud mother Lynne, 47, said: “Fortunately, Holly responded very well to the treatment right from the start. She had been very cautious in her movement, as the condition causes pain, but the difference was just incredible. Holly was waking up in the morning feeling great.”

Nick Bishop, Europe’s only professor of paediatric bone disease, who treated Holly, said he and his team would miss her.

“Looking forwards, we hope that new treatments now being studied in adults with osteoporosis will become available soon for children with brittle bones, and that all children with this condition will benefit from specialist team input in the future,” he said.