Mum says toddler’s squint was main symptom of rare and dangerous brain disorder

Nellie Gillet, pictured with mum, Megan, has been diagnosed with metachromatic leukodystrophy. (SWNS)
Nellie Gillet, pictured with mum, Megan, has been diagnosed with metachromatic leukodystrophy. (SWNS)

An otherwise healthy toddler has been diagnosed with a rare brain disorder after her mother noticed that she was squinting.

Megan Gillet, 35, says that her three-year-old daughter Nellie has been developing as expected before she started squinting and was unable to walk, and now doctors have warned that the child may not live past the age of five.

"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," Gillet, from Brighton, says.

"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, we try and find joy in the day-to-day. She might have lost everything but to me, she’s still magical."

Nellie was diagnosed with the brain disorder metachromatic leukodystrophy (MLD) after her parents first noticed her symptoms when she was one.

Nellie with her mum Megan and dad Tom. (SWNS)
Nellie with her mum Megan and dad Tom. (SWNS)

While they initially thought she may have cerebral palsy, she was diagnosed with MLD which affects just one in 40,000 people in the UK. Some symptoms of MLD include loss of intellectual, thinking, memory and motor skills.

When Nellie was diagnosed, Megan and her partner Tom were told that she would need to go into hospice care.

"It was absolutely horrific getting the news that Nellie’s life was going to be cut short," Gillet says. "They took us in a room and told us the only available treatment was through the hospice."

As MLD is an inherited condition, Nellie’s younger brother Ozzy has also been tested, which came back negative.

Following the diagnosis, Gillet says that she and Tom stopped working and had an ‘amazing summer’ filled with Peppa Pig parties, festivals, caravan holidays and days out.

"There are lots of other things to do - such as swimming, animal handling, music days, race cars and playgroups," Gillet says.

"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."

To give back to the hospice, Gillet has started a JustGiving page to raise money for Chestnut Tree House, which is a children’s charity providing hospice care and community support for kids like Nellie.

To donate, visit

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