A HEARTBROKEN mother says she is “living in hell” after being told her two-year-old has a terminal condition... but is determined to make her time left special.

Megan Gillett, 34, gave birth to her daughter, Nellie, in December 2019 after experiencing a miscarriage the year prior. 

She and her partner Tom Oakshott, 37, from Eastbourne, were overjoyed at the birth and immediately knew Nellie was “sent to us to change the world”. 

Nellie’s middle name is Sunshine and has quickly become known to those around her as Nellie Sunshine due to her “magic” personality. 

Within the first ten months of Nellie’s life her parents began to notice symptoms relating to hypotonia, or “floppy infant syndrome” which means that she has decreased muscle tone.

The Argus:

There were also signs of neurological issues which alarmed her parents and led them to seek help for several years. 

Since December 2021, Megan says that her daughter is now unable to crawl or even speak as well as she once could, she also developed herpes in her mouth and an eye squint.

Nellie was diagnosed on May 14 this year with Metachromatic leukodystrophy (MLD) and her parents were told she has just three years left. Her mum said she will deteriorate in the next six months.

MLD is an extremely rare autosomal recessive genetic disorder and once it has progressed past the juvenile stage there is no cure. 

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Megan said: “I feel like I’ve had to block that day out a bit, I had done so much research so as soon as I walked into the room I knew it was MLD.

“I just hoped that they were going to say it was still juvenile, which means she could have had gene therapy to cure her. But they told us it was infantile. 

“Our hearts just broke that day. I know they will never be repaired. It’s like living in hell.

“We’re in the mind set at the moment that now is not the time to be sad because she’s with us and whilst she’s here we have to be happy.”

The Argus:

To ensure Nellie lives the rest of her life experiencing joy, her parents have devised a “bucket list” of things to do with her. 

Megan said: “All these memories we thought we had time to make with her, we don’t have time for, so we’re trying to do as much as possible. 

“We’re trying to make sure everyday that we’re stimulating her, to get as much out of her and keep her brain going.

“She can’t really move, her language is becoming less and less, but her sense of humour is still amazing. She’s still very happy.”

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Among the plans on Nellie's bucket list are Disneyland Paris, Center Parcs, a festival, days out with animals and nature and hopefully they will make it to Lapland in December.

Megan added: “She’s been living like this for so long, but she just keeps on going and she never moans, she is such an easy and happy child.

“When we named her Sunshine, we had no idea it would end up meaning what it does now. We want to honour her sunshine.”

Megan’s good friend Vicki Rawlings, has set up a Go Fund Me page to help raise money for Nellie’s bucket list, you can donate here: https://gofund.me/98c09a4d