Nellie’s story

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 I have a few blissful seconds before I remember that Nellie is now severely disabled and that she has a terminal illness. A world very few people can relate to because no one would allow themselves to dwell on that nightmare for a second.

Nellie was two years old when she 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 already lost her ability to move, talk, eat and play, but worse than anything, we watch her fighting with her brain to make it do what she wants it to do.

“There is life after a terminal diagnosis, you just have to choose to live it”

We have been told that MLD will steal our beautiful daughter from us most likely by the time she is five or six.

As a family we realised quite early on that we couldn’t control our situation, but we could control how we approach it. I feel a great duty to giving her the most beautiful, joyful, normal life. A life filled with love and adventure. And with the help our local children’s hospice, Chestnut Tree House, we can do just that.

The hospice is a place of joy for children like Nellie who won’t reach adulthood. A sanctuary for families who feel they are on the outside of most places they go, and somewhere they can make precious memories.

“Emma is our lighthouse in this storm and we are so grateful for her”

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 takes her dry slope skiing, they ride speedboats together and every photo I see of them, Nellie has the biggest grin on her face. 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.

To have someone like Emma on our team makes this experience easier. 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.

“I miss the daughter I had but I’m grateful for the short time we have left”

It’s a 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 weigh heavy around your neck. Remembering how life was before diagnosis, before the world suddenly spun differently.

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 makes 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.