Megan Gillett, who lives in Eastbourne, is scared of heights – so being suspended 450ft above the city of Brighton and Hove wouldn’t be top of her Christmas list.

But Megan has a very compelling reason to take on Jingle Bell Drop, the festive abseil down the Brighton i360 in aid of children’s hospice Chestnut Tree House.

Megan’s daughter, Nellie Sunshine, was diagnosed with a progressive, life-limiting brain disease last year. “I see my daughter go through so much,” says Megan. “And I go through so much with her that I know I can do this. I want to be brave, like she is.”

Until Nellie was two, she was developing normally – although she never walked. When they realised she wasn’t meeting all her milestones, the family began to think she might have cerebral palsy.

Eventually, a brain scan revealed a progressive disease, as Megan explains. “It was in May that we got the diagnosis and by September Nellie couldn’t move, talk, swallow or do anything really except smile and laugh. We spent that summer making memories, doing everything we could with her before she lost everything.

“Emma, our nurse from Chestnut Tree House, came into our lives last October. Nellie has always been a bit of an adrenaline junkie and my favourite thing about Emma is that she doesn’t see Nellie as disabled. She’s taking her skiing, they’re riding a speedboat together… Emma’s attitude is if it’s something Nellie would enjoy, she’ll find a way for them to do it.

“That means so much to me because people tend to treat Nellie with kid gloves – even people who have been in her life since she was born are scared to touch her now, in case they hurt her.”

Chestnut Tree House’s community nurses visit children and young people at home to deliver care, give parents and carers a break and have fun. “Emma is one of Nellie’s favourite people and she’s really become almost like a member of the family,” says Megan.

“Every picture I have of them together on days out, Nellie just has the biggest grin. I know when she’s with Emma, she’ll probably have a better time than she would with me!

“I trust Emma implicitly. When you have a child with a life-limiting condition, you spend so much time chasing medical professionals and she has taken a lot of that off my hands. She’s also done extra training with me to increase my confidence in supporting elements of Nellie’s care, such as maintaining her feeding tube.”

The support is there for the rest of the family, too. Megan has had counselling at the hospice and brings her four-month-old son to playgroup at Chestnut Tree House so he’s familiar with the environment.

On 24 November, Megan will be joined by her brother, Rory, as they brave the 450ft descent down the i360. “I’m not planning to think about it until I’m up there. And then I’ll probably keep my eyes shut the whole time!” says Megan.

“I have a bit of a following on Instagram and people often ask if they can make a donation for Nellie. We had a GoFundMe when she was first diagnosed to help us achieve her ‘bucket list’, but otherwise we don’t need the support as a family. But by doing this, we’re asking people to support the most amazing charity.

“Rory and I plan for this to be the first of a series of annual events fundraising for Chestnut Tree House. While Nellie is here, we’ll stay small and then when she’s no longer with us, we hope to keep getting bigger and bigger.

“Emma, our Chestnut nurse, is my angel in all of this. Doing this is my way of saying thank you.”

Support Megan on her JustGiving page.