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.
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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 (MLD).
Now Megan and her partner, Tom Oakshot, 39, have been making the most of the time they have left with their daughter, taking her to Peppa Pig parties, festivals and caravan holidays with Nellie’s five-month-old baby brother, Ozzy.
‘She’s still magical’
Megan is determined to “find the joy in the day to day” and insists the family will “keep living — not focus on the dying”.
Megan, a personal banker from Brighton in the UK said: “In just months, Nellie went from being an able child — albeit not walking — to not being able to do anything at all. It was heartbreaking.
“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.
“It was absolutely horrific getting the news that Nellie’s life was going to be cut short,” Megan said.
“They took us in a room and told us the only available treatment was through the hospice.”
MLD is an inherited condition, and Nellie’s brother, baby Ozzy, has since tested negative.
“We don’t want to be sad when she’s gone,” Megan added. “That’s when we can be sad. She’s still here and can smile.
“There’s lots of other things to do — such as swimming, animal handling, music days, race cars and play groups.
“Our hospice nurse, Emma Sharp, is an angel and has helped Nellie discover her inner adrenaline junkie — with skiing, zip wire and speedboat opportunities all in the diary.”