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Diagnosed With Rare Brain Disorder, Toddler’s Prognosis Is Heartbreaking

Toddler with rare brain disorder may have only two years to live

A “healthy” toddler was diagnosed with a rare brain disorder after she developed a squint – and may only live another two years.

Nellie Gillett, three, had been developing at an expected pace before mom, Megan, 35, noticed her symptoms.

Nellie started squinting and was unable to walk so Megan took her to the doctor in May 2022 – where she was with brain disorder metachromatic leukodystrophy (MLD).

The prognosis for Nellie is “heartbreaking” and doctors warned she may not live to the age of five.

Megan is determined to “find the joy in the day to day” and insists the family will “keep living – not focus on the dying”.

Nellie Gillett began squinting which led doctors to diagnose the brain disorder metachromatic leukodystrophy. PHOTO BY SWNS 

Megan, her partner, Tom Oakshot, 39, a property developer, have been making the most of the time they have left with their daughter – going to Peppa Pig parties, festivals and caravan holidays during the summer – with Nellie’s little brother, Ozzy, five months, in tow.

Megan, a personal banker, from Brighton, Sussex, 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.”

Nellie was just a year old when her parents started to notice her symptoms.

Megan first suspected the toddler may have cerebral palsy – but instead she was diagnosed with MLD.

MLD is a rare brain condition, which affects just one in 40,000 people in the UK. The symptoms include loss of intellectual, thinking, memory and motor skills.

Nellie Gillett began squinting which led doctors to diagnose the brain disorder metachromatic leukodystrophy. PHOTO BY SWNS 

The prognosis is usually five years after diagnosis.

Megan was told Nellie would need to go into hospice care for the foreseeable future.

She said: “It was absolutely horrific getting the news that Nellie’s life was going to be cut short.

“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.

Megan added: “We stopped working and had an amazing summer doing everything we wanted – Peppa Pig parties, festivals, static caravan holidays, constant days out.

“We don’t want to be sad when she’s gone – 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.”

Megan and her brother, Rory, 32, raised £2,030 for Nellie’s hospice, Chestnut Tree House Children’s Hospice.

They plan to abseil down Brighton’s i360 on November 24.

Pascale Harvie, president and general manager at JustGiving said: “I was deeply saddened to hear little Nellie’s story.

“No parent should ever have to face the possibility of losing their child, and yet despite what Megan is going through, she has somehow found the strength and courage to take on this challenge.

“Megan, is an amazing mom and an all-round incredible person, I wish her the best of luck with her abseil.”

Produced in association with SWNS Talker

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