Our Blog

Nellie’s story

Published on: 17/02/2025

Nellie Sunshine was diagnosed with a progressive, life-limiting disease at the age of two. Her parents are heartbroken, but time is precious and with the support of Chestnut Tree House they are determined to fill her life with joy and make every moment count. Nellie’s mum, Megan, shares her story.

“I have seen my daughter go through so much”

Sometimes I feel like I’m in a different world to everyone else, a world where I wake up and have a few blissful seconds before I remember that my daughter is now severely disabled and that she has a terminal illness. It’s a world very few people can relate to because they can’t even bring themselves to imagine it.

Nellie was two years old when she was diagnosed with Infantile Metachromatic Leukodystrophy, otherwise known as MLD. It’s a rare genetic disease which means the enzymes in her liver attack the myelin protecting her brain, damaging the nerves that send messages to her body.

She has lost her ability to move, talk, eat and play, but what’s worse than anything is watching her fighting with her brain to make it do what she wants it to do.

Nellie is five now, and we have been told that MLD will most likely take her from us before she is much older. Consequently, I feel a great duty to give her a beautiful, joyful, normal life – filled with love and adventure – and with the help of Chestnut Tree House, that’s exactly what we do.

Nellie and Megan and nurse at Chestnut Tree House

A lighthouse in the storm

Our Chestnut nurse, Emma, has become our lighthouse in this storm. With her, Nellie has been able to enjoy experiences I never could have imagined.

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. 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. Together, they have been dry slope skiing, ridden a speedboat and even had a go at accessible sailing and ice skating.

It’s painful to say that I’m grieving a little girl I once had when I can still kiss her face. But I do; I am heavy with the grief of missing her. It’s the reminders of what once was, of what should be that blindsides you, that weighs heavy around your neck. Remembering how life was before diagnosis, before the world suddenly spun differently.

Help on their journey

I try not to be sad though. I’m going to have to live most of my life without Nellie, so I want to focus on how amazing it is to have her still. To help on this journey, I’ve had some sessions with a Chestnut counsellor.

It’s a chance to talk about all areas of my life, including how parenting a child as ill as Nellie can be hard on your relationship. The counselling helps to make us an even stronger team for our daughter, and I feel grateful knowing that the emotional support will continue when Nellie is no longer here.

Because of Nellie’s care needs, we can’t leave her with her grandparents or a babysitter. Recently, my partner Tom celebrated his 40th and Nellie came to stay at Chestnut so we could go away together. She had a wonderful time at the House – she went swimming, had a pamper session, enjoyed the sensory and accessible garden and woodland walk (she loves looking for fairies), rode on the accessible bike and enjoyed a walk at the seaside.

When you have a child with a life-limiting condition, you spend a lot of time chasing medical professionals. Emma has taken a lot of that off my hands. Recently, Nellie had to have an operation, and I don’t think it would have happened if we didn’t have Emma on our side. She is always at the end of the phone when we need help or advice.

Montage of Nellie and Megan and nurse at Chestnut Tree House

An amazing gift to leave

It’s because of Emma that my family wants to support Chestnut Tree House as much as possible. I’m terrified of heights, but in 2024 I abseiled down the i360 in Brighton and this year, my brother Rory is running the London Marathon. He’s already raised almost £7,000 and we hope he may be able to carry Nellie over the finish line with him.

We are doing our utmost to live every one of Nellie’s days to the fullest, creating memories and finding the joy in everyday life. Families like ours are going through the worst thing imaginable, but the support of Chestnut Tree House really has helped. That’s why we want to say thank you while Nellie is still with us, as a way of honouring her.

I know how much it costs to deliver Chestnut’s care costs – almost £6m a year – and how little of that comes from government funding. That’s why I’m asking you to think of children like Nellie when you’re making your Will. Gifts in Wills make up a significant part of the hospice’s income, and if you decide to support Chestnut Tree House after you’ve gone, you will be leaving an amazing gift behind.

No matter the size of your gift, you’ll be helping children and families make wonderful memories together in the time they have left.

Leave a gift in your Will

Could you help hospice care live on for all, for now, forever by leaving a gift in your Will? Fill in the form below and we'll send you a free guide, or find out more here:

Learn about leaving a gift in your Will