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

A once healthy toddler has been diagnosed with a rare brain disorder after her mother noticed her squinting.

Megan Gillet, aged 35, shares that her three-year-old daughter Nellie had been progressing normally until she started squinting and eventually lost the ability to walk. Now doctors have warned that Nellie might not live past the age of five.

“Within a few months, Nellie went from being a capable child, although she couldn’t walk, to not being able to do anything at all. It was devastating,” says Gillet, a resident of Brighton.

“I want people to understand that a diagnosis doesn’t have to be the end. We’re focused on living, not dying. I want there to be moments of happiness amidst the sadness. Although she has lost everything, she is still magical to me.”

Nellie was diagnosed with metachromatic leukodystrophy (MLD), a rare brain disorder, after her parents noticed symptoms when she was one year old.

Initially, her parents suspected cerebral palsy, but Nellie was eventually diagnosed with MLD, which affects just 1 in 40,000 people in the UK. MLD can cause loss of intellectual, thinking, memory, and motor skills.

Upon receiving the diagnosis, Megan and her partner Tom were informed that Nellie would require hospice care.

“It was absolutely devastating to learn that Nellie’s life would be cut short,” says Gillet. “They brought us into a room and informed us that hospice care was the only available treatment.”

Since MLD is an inherited condition, Nellie’s younger brother Ozzy was also tested, but the results came back negative.

After the diagnosis, Gillet and Tom decided to leave their jobs and create memorable experiences for Nellie. They had an incredible summer filled with Peppa Pig parties, festivals, caravan holidays, and outings.

“There are plenty of things to do, such as swimming, animal interaction, music days, race cars, and playgroups,” says Gillet.

“Our hospice nurse, Emma Sharp, is an angel and has helped Nellie discover her love for adrenaline-inducing activities like skiing, zip-lining, and speedboating – all scheduled in our calendar.”

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To show their gratitude to the hospice, Gillet has created a JustGiving page to raise funds for Chestnut Tree House, a children’s charity that provides hospice care and community support for kids like Nellie.

To donate, visit justgiving.com

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