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How Louise copes with Harry’s rare disease

harr louise rare disease fragile X learning diability
harr louise rare disease fragile X learning diability

Louise Lawrence felt that baby Harry had a problem. Her persistence led to a diagnosis of Fragile X syndrome.

Things didn’t seem right with baby Harry

Louise Lawrence sensed a problem with baby Harry right away. “My gut feeling told me something was wrong. He was often inactive, slept a lot, cried rarely and could not latch on to my breast. As someone who runs a nursery my professional instincts also told me things were not right.”

Harry was three when he was diagnosed with Fragile X Syndrome

Fragile X, a genetic condition, is the most common known cause of inherited learning disabilities affecting one in 4,000 males and one in 6,000 females. Some cases are mild, but others bring behavioural and sensory problems, severe learning disabilities, restlessness, distractibility, and over-activity. There is no known cure.

“Harry is big and strong but he cannot control his emotions or concentrate for long, has severe anxiety, communication problems, learning disabilities, autism, ADHD, Tourettes, partial deafness, incontinence, physical issues and on-going medical needs. He cannot deal with lots of noise, busy environments, instructions and socialising,” Louise says.

“He is strong-willed and isolates himself from the world, feeling safer at home. With me he is a gentle giant and loves feeding the calves on our farm, but he is hard to control with erratic behaviour. He has gone through six carers since last July and been excluded from a school for children with severe multi-complex needs,’ says Louise, 34, from Little Clacton, Essex

Louise says: “If you are convinced something is wrong, be your child’s voice – ask for tests.”

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