Teaching assistant adds her voice to school’s play equipment appeal – Ehlers–Danlos syndrome.

col_smiles_shLIZZIE Kilby dreamed of being a runner.
As a child, it was all she ever wanted. She dreamt of running for Essex and competing in the Olympics.
But her hopes and dreams where left in tatters when she was diagnosed with Ehlers–Danlos syndrome.
The condition occurs when the body’s collagen is defective causing joints to repeatedly and regularly dislocate.
Lizzie started to use a wheelchair when she was ten and by the time she was 13, she was in it permanently.
“I was the fastest runner in primary school,” she said.

“I used to run with a club and I did trampolining. To be a runner was all I ever dreamed of, I set my heart on it.
“All of that disappeared within seconds of me getting in the wheelchair.”

But Lizzie is a feisty and determined woman and her innate stubbornness means she is not one to give up easily.
She went to college where she studied health and social care and did work placements in mainstream and special needs schools.
Today, she works as a teaching assistant but, as with everything in Lizzie’s life, it hasn’t been an easy journey.
One of her work placements was at Lexden Springs School in Halstead Road, Colchester. She loved the school so much she returned as a volunteer.

Then she became a midday assistant and then a part-time learning support assistant before working her way up to her current job.
But every day Lizzie battles with pain as her joints – her wrists, fingers, ankles, knees, elbows, shoulders, even her vertebrae – dislocate.
Her husband Tom, who is also a teaching assistant at the school, said: “She can have 30 dislocations a day, five before 9am.”
Calmly, stoically, Lizzie pops the joints back into position.

She wears splints on her wrists, hips, legs to try to keep them straight.
But despite the pain, she defiantly refuses to let the condition rule her life.

Read More: Daily Gazette

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