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VIDEO: Unique Lewis is bouncing back
THE family of a little boy ‘written off’ by doctors before he was even born are telling his story to raise awareness of genetic conditions.
Lewis Preuss, two, is the only documented person in the world with the disorder 8 del 8q24.11-q24.22, and is missing one of the body’s 46 chromosomes.
The youngster’s joints stretch further than normal, he is intolerant to touch, and he has trouble breathing, with a simple cold meaning he needs oxygen at the hospital.
But Lewis is now defying the doctors and has just started walking.
Mum Leanne, 32, who was offered a termination during her pregnancy, said: “He hates teddy bears.
“He can’t cope with them, they’re too stimulating. “He only likes hard toys and he touches them with his head or feet.”
Lewis was also born with two holes in his heart and is being tested for autism.
His condition is so rare that his future is unknown and it is feared that he could be prone to cancer or have problems with movement.
Yet Leanne and dad Darren, 31, a technician in the Army, say their son is a ‘miracle’.
“When I was told I had a one per cent chance of having a child with a chromosome disorder, I was offered a termination which we refused,” says Leanne. “Now he’s doing all the things he was written off for. He’s just started walking, loves chasing our two boxers round the house and trying to get through the baby gate. “I celebrate every one of his magic milestones until I cry with happiness.”
Leanne, who now lives with her family in Blandford, said life has not always been easy.
She said: “I’ve learnt what unconditional love is and to be patient, that these children shouldn’t be written off – and that we’re not alone.”
The family has found the support of charity Unique ‘invaluable’. Leanne said: “When Lewis was diagnosed it was Unique that explained the condition to us.
“Their Facebook group has helped me realise that there are other people that we can link to. I post on there and it keeps me going.”
The toddler and his family are helping to raise awareness of Jeans for Genes Day with charity Genetic Disorders UK.
Now in its 18th year, the event will take place on September 20 and invites everyone to wear their jeans to work or school in return for a donation.
For more information, visit jeansforgenesday.org
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