Great Ormond Street Hospital Children's Charity - This Learning Disability Week, meet Scarlett...
Posted On: 27/06/16
Searching for a diagnosis for Scarlett
“Scarlett was born just before Christmas at Queen Charlotte’s Hospital in West London. She was six weeks early and, at only 3lbs, she could fit in my hand. She was in hospital for the first six months to build up her strength, and because she would struggle to breathe and need oxygen. Then, rather charmingly, one of the consultants said she had dysmorphic features. We had no idea what that was and Googled it. It was a very traumatic time and the point our journey with GOSH started.
“Until Scarlett was six years old we went to GOSH regularly as genetic specialists tried to find a diagnosis for her. Fast forward six years and we reached a dead end. The specialists knew it was something genetic but couldn’t identify which genes related to it. The medical staff were quite upset that we hadn’t got the diagnosis we were searching for but actually we were relieved because it meant that the testing stopped and we could get on with life.”
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