Eastbourne toddler with short life expectancy turns three: 'We’re just enjoying every moment we have with her'

In April this year Nellie Oakshott was diagnosed with infantile metachromatic leukodystrophy (MLD) and given a life expectancy of five. The National Organisation for Rare Disorders said: “Symptoms vary by type but can include difficulty talking, seizures, difficulty walking, personality changes and behaviour changes.”

More on the diagnosis here

On December 11 Nellie celebrated her third birthday with a fun weekend at Centre Parcs meeting Father Christmas and then Longleat Safari Park for Roald Dahl’s ‘Festival of Light’.

At the time of the diagnosis, parents Megan Gillett and Tom Oakshott said they wanted to create family memories with Nellie. Family friend Vicki Rawling has set up a fundraising page for the family to make Nellie’s life as special as possible.

Megan said: “We’ve had a lovely summer filled with family trips and days out, we didn’t stop! The fundraiser has helped do fun things with Nellie - that’s what it’s there for. It’s amazing people are still donating.”

Vicki said: “In just a short space of time this cruel disease has taken so much from the lives of Nellie, Tom and Megan. Her words have gone, her movement is extremely limited and the pain is sometimes too much for her to bear. But despite the dark fate ahead Nellie still finds joy in life everyday, she is an angel. Her eyes are like pools of dreams, her smile lights up a room, her determination is truly inspiring.

“Thanks to all the money raised through the just giving page, the generosity of so many, they have been able to enjoy a summer full of the most wonderful activities creating beautiful memories as her condition has deteriorated, the family of three haven’t wasted a minute.

“Despite this life expectancy, Megan has hope she will defy the odds and live longer than expected, Nellie continues to surprise us all everyday with her courage, bravery and dedication to keep going. Happy third birthday to Nellie, the girl with the tenacious spirit!”

Megan said: “We’re trying to be happy. She’s lost so much but she’s doing so well. She’s not in pain, not on medication, and she’s gone back to nursery. We’re just enjoying every moment we have with her because we know how fast we can lose things.”

Looking ahead to Christmas and the new year, Megan said they have lots of festive plans for Nellie and are expecting their second child in April, making Nellie a big sister. They hope as a family of four they can go abroad too.

There is treatment for MLD if it is caught early enough, but sadly Nellie’s condition had progressed too far when she was diagnosed. This has triggered the subject to be raised in Parliament, as MP Caroline Ansell wants to see MLD checked for in the newborn heel prick blood test.