Eastbourne mum faces fear of heights for 3-year-old daughter

Megan Gillett, from Eastbourne, is taking on the challenge for her three-year-old daughter Nellie Sunshine, who was diagnosed with a progressive brain disease last year.

“I see my daughter go through so much,” said Megan. “And I go through so much with her that I know I can do this. I want to be brave, like she is.”

Mum Megan said she wants to be brave like Nellie (Image: Chestnut Tree House)

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.

• READ MORE: Parents say early diagnosis could have saved their little girl

Nellie when she was two

Megan said: “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. She is my angel in all of this. 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 our lives 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.

Three-year-old Nellie has a progressive brain disease (Image: Chestnut Tree House)

“Emma is one of Nellie’s favourite people and she’s really become almost like a member of the family,” said 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."

Nellie with mum Megan and dad Tom

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 November 24, 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.

“Rory and I plan for this to be the first of a series of annual events fundraising for Chestnut Tree House. While we have Nellie with us, 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.”

• You can donate to Megan's fundraiser here www.justgiving.com/page/megan-gillett-1693910949983