A “healthy” toddler was diagnosed with a rare brain disorder after developing a squint as her first symptom. Doctors have now warned her mum the three-year-old could have just two more years to live. Nellie Gillett, three, had been hitting all her usual developmental milestones when her mum, Megan, 35, noticed a squint in her eyes. She was soon unable to walk, so Megan took her to the doctor in May 2022, and she was later diagnosed with brain disorder metachromatic leukodystrophy .
“I don’t want people to think a diagnosis is always the end. “We’re trying to keep living — not focus on the dying. “I don’t want it to always be sad, finding the joy in the day to day. “She might have lost everything, but to me, she’s still magical.” MLD is a rare inherited brain condition which affects just one in 4,800 births in Australia. The symptoms include loss of memory and motor skills and the life expectancy is usually five years after diagnosis.
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