Devoted mum to face her fears in abseiling fundraiser for hospice caring for her three-year-old daughter – after ‘squint’ led to rare brain disorder diagnosis

Mum-of-two Megan Gillett, 35, will be abseiling down Brighton’s i360 on November 24 to raise funds for the local hospice that cares for her three-year-old daughter, Nellie, who has been diagnosed with a rare brain disease that affects 1 in 40,000 births.

Megan, who has raised over £1,750 for the Chestnut Tree House Children’s Hospice, set up the fundraiser on JustGiving with her brother Rory, 32, who will be joining her on the abseil.  

Nearly two years have passed since new parents Megan and Tom Oakshot, 39, started to notice something was amiss with their young daughter. 

Megan recalled: “In every other way she had developed like a healthy child. Then she started to develop a squint and never managed to start walking. 

“By the time she was diagnosed, I thought she was going to have cerebral palsy – looking back, that would have been absolutely fine.” 

Nellie was diagnosed with metachromatic leukodystrophy (MLD), a rare inherited disorder of the brain, and in May last year Nellie’s physical skills progressively worsened.  

Megan 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. 

“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.” 

It has been 18 months since Megan was told that her daughter, Nellie, may only live to five years old and since then, her family including new addition, five-month-old Ozzy, have been making the most of the precious time they have left together. 

Megan explained: “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.”  

The Chestnut Tree Children’s Hospice has played a vital role in helping create special memories for the family. 

Megan said: “Their goal is to try and give these children as much of a life as they can – and they really do succeed. They have an inclusive playground, which doesn’t sound like much, but Nellie loves it. It means she can do everything any other children can.  

“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.” 

As well as raising money for the hospice, Megan is raising awareness of MLD, and is determined to change the screening processes in newborns to test for the rare condition. 

Megan said: “If Nellie had been screened for MLD as a child, things could have been so different,  

“There’s radical new treatment involving gene therapy that offers a lot of hope – but you have to be pre-symptomatic for it to work.” 

Ozzy was tested in the womb for MLD and although he doesn’t have the condition, he is a carrier of the gene. 

Megan concluded: “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.” 

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 Mum and an all-round incredible person, I wish her the best of luck with her abseil.”  

For more information or to contribute to Megan’s cause, click here. 

NOTES TO EDITOR

For further information contact  press@justgiving.com

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