Ilford teenager talks about his rare illness in front of the camera
A teenager is appearing in a film to tell people about his extremely rare bone disease, which affects three in every one million people.
Pierre Libert, 14, of Cranbrook Road, Ilford, has Ollier disease, which causes deformity in his bones. He was diagnosed when he was a baby.
He was filmed for the documentary, which is being produced by an American film-maker, on Thursday at Newbridge School for children with special educational needs in Barley Lane, Goodmayes.
The pupil of Seven Kings High School, Ley Street, has recently undergone his 16th surgery.
He said: “The hardest thing about the disease is that I’m not able to walk very well or move freely.”
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The condition affects Pierre’s legs, left arm, hands and ribs, and he currently has a frame on his leg to help straighten and lengthen the bone.
He said: “I wish I could have a little more freedom like my brother, but hopefully once I have the second frame removed I will be able to walk unaided.
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“It helps when I speak to others who have Ollier’s, as I realise I’m not the only one affected.”
Until a few months ago Pierre was unable to move his knee joint, which meant normal day-to-day tasks were difficult.
Emma Woodward, senior physiotherapist at North East London NHS Foundation Trust, said: “I have been working with Pierre since March and he has a fabulous attitude to his treatment and nothing seems to faze him.
“He couldn’t sit in a chair or walk upstairs, so drastic actions needed to be taken and now he can move his knee 90 degrees.
“I think this documentary will help people understand more about the condition and hopefully it will help build up a support network.”
Pierre’s father Andrew Caan said: “I decided to start a support group as many who have Ollier’s go their whole lives without meeting anyone else affected.
“The physio has also helped him realise there are ways he can tackle the disease.”
The documentary, which will also tell viewers about the disease in another youngster, has not yet been given a title.