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Amber’s Story

Amber’s Story

Amber is a mum of 2 who has OI, she shares with the Brittle Bone Society her story on parenting:

“There was always a fifty/fifty chance. My doctor who’d put me on bisphosphonates in my late twenties told me “you can have a baby you know”. I was single then and I’d never really considered it clearly.

But a decade later, once married, the reality of the pregnancy meant I could be bed bound, the risk of fracture high, and a controlled c section at birth. It was delayed twice before the SCBU were in place. Monday’s child was born fair of face, he was perfection and we were both fine.  A club left foot meant treatment started within three weeks with a wonderful doctor in Gobowen who straightened his foot that first visit. Weekly plaster casts and then boots and bar. Looking in my baby’s eyes was like looking in a mirror, he had the same blue tinged whites like mine.

I had a baby girl two years later, beautiful, healthy with whiter than white eyes.

At Alderhey age three and a half it was confirmed that my lively active boy had inherited Osteogenesis Imperfecta, not as badly, but his L3 and L5 vertebrae had compression fractures. Four cycles of Zolendronic Acid followed. Tears, fear, anger and frustration “I don’t want the pins sticking in me” he cried as they tried and eventually succeeded taking blood and getting the cannula in his tiny veins.

The realisation before each visit that we were going to have “the wiggly worm” in his hand didn’t help but he complied. We go again in four days time, the L3 vertebrae is looking worse. “But why do I have to have Brittle Bones? Why me?” Echoing my younger self. With a lump in my throat I gently explained that if anyone knows what it’s like I do. By the time I was seven I’d had numerous fractures just out playing. There was no medicine to help me.

The wonderful doctor in Gobowen is now treating me with an osteotomy and Hexapod frame on my lower right leg correcting a curve.

My son looked at my frame and then into my eyes with clarity and saw he was looking into a mirror too. “Poor mummy” he whispered and hugged me. We are both rare beings and have brittle bones,  but we are strong and determined. We can do whatever we set our minds to. I’ve never let it define me.”

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