Give to GOSH: 'My parents said it was like having another daughter, that's how dramatic the change was'

Elena Reading, 21, was born with a deformed skull. Years of treatment from specialists at Great Ormond Street Hospital have changed her life dramatically
Life-changing: Elena Reading aged seven, after several operations to her face and skull
Elena Reading
Sebastian Mann2 January 2016

Often the difference made by doctors at Great Ormond Street Hospital is huge but hidden: the scar on the chest or the memories of trauma. But for Elena Reading it is plain to see.

She was born with a rare genetic condition known as Crouzon Syndrome, which meant her skull was deformed and her eyes couldn’t close properly because of the abnormal development of their sockets.

Before the age of three she had undergone major facial surgery and at 11 she was made to wear something known as a rigid external distraction, or RED frame, to help reshape her skull.

Looking back on it now, Elena believes the device – fitted at GOSH - changed her unrecognisably.

Elena, pictured on her 21st birthday
Elena Reading

“My parents would always say that it was like having another daughter. That’s how dramatic the change was,” the 21-year-old marketing student said.

“If I was a child now I don’t think I would recognise myself in the future.”

Elena poses for a selfie with friends on a night-out before heading off to university (Picture: Elena Reading)
Elena Reading

Crouzon Syndrome is an inherited genetic condition said to affect around one in 60,000 people. Other members of Elena’s family also have it, but Elena’s symptoms at birth were far worse.

It has meant ongoing treatment that continues to this day. Throughout her childhood Elena was still seeing specialists at GOSH.

“I have nothing but great things to say about [GOSH],” Elena said.

“I’ve been there for the last 21 years and I think without their medical intervention I would have had a completely different life.”

She added she really appreciated largely seeing the same doctors all her life.

“It means it’s less daunting, more like they’re your family members - extended family,” she said.

Unsurprisingly, the experience has left a deep mark on the Greenwich University student. After graduating, Elena hopes to go into charity marketing – at GOSH, if she has it her way.

Like Elena, you can support GOSH by donating here, or by giving something up for January as part of a new stage in our Give to GOSH appeal. Find out more about how to do so here.

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