03-08-2025
My daughter has a terminal illness but her life still has value
When Megan Gillett learnt that her daughter, Nellie, would probably die before her eighth birthday, she wrote a list of things she would never see.
'I will miss you starting school, wearing a uniform or dressing up for World Book Day,' she noted.
Then she put the letter away and vowed to make Nellie's life one full of love and happiness, not grief – creating a new list, full of joyful adventures she wanted Nellie to have.
Personal banker Megan, 37, says, 'Nellie has had experiences most five-year-olds haven't. Other parents think they have time, but we don't have time with Nellie, so we do things now.
'When she smiles, we smile. The smiles are starting to be stolen now by the dementia which comes with her disease, but she is so brave you wouldn't realise what is happening.'
In May 2022, aged two, Nellie was diagnosed with a progressive brain disease, metachromatic leukodystrophy (MLD).
The genetic condition means enzymes in her liver attack the layer protecting her brain, damaging the nerves which send signals around her body. Sufferers lose the ability to move, talk, eat and play as their body deteriorates.
Doctors told her parents that Nellie wasn't expected to live beyond the age of five but the life expectancy of a child with MLD has now been raised to eight.
Megan and her partner, Tom, 40, have spent the past three years ensuring that Nellie's life is as happy and full of love as it could be, writing her bucket list, including dry-slope skiing, horse riding and a theatre trip.
When life took a turn
Nellie was born on December 11 2019, weighing 6lb 8oz. Megan says: 'Despite being anxious after a previous miscarriage at 10 weeks, the pregnancy was lovely. I ate my way through a Victoria sponge every day.
'At 20 weeks, we learnt we were having a girl and were so happy. When she was born, I felt like I had come home, as if I had been waiting for Nellie my whole life.'
The couple called their daughter Nellie Sunshine and settled into family life, until the pandemic hit three months later.
Megan couldn't see other babies to compare progress with, but while Nellie was 'sunshine by name and sunshine by nature', she had low muscle tone and seemed floppy.
Megan's mother and her GP were concerned Nellie couldn't move her arms properly, but at 10 months, a hospital consultant dismissed her as 'fine'.
Nellie's first word was 'Mama', however, she didn't start walking and one foot began turning inwards. Then she developed a squint.
Testing finally gave a diagnosis and on May 12 2022, Megan and Tom, from Eastbourne, were called to see Nellie's doctor in London.
Megan says: 'It was a short meeting. They explained Nellie had MLD, it was too late for treatment and she would likely die around the age of five.
'Then they said they would pass us to the palliative care team. Tom and I were in such shock, we thanked them and left. I remember walking across Westminster Bridge together, getting on the train home and having to ring our families to tell them Nellie wasn't going to grow up.
'When we spoke to the palliative care team I couldn't stop crying. I couldn't imagine talking about my child and palliative care in the same breath.'
Determined to make memories
By August 2022, Nellie had lost 'everything'. She was no longer able to move or communicate. Megan says, 'It was insanely quick, a matter of weeks, but she smiled throughout. She was so brave and we channeled that.
'A friend kindly set up a GoFundMe to enable us to make memories with Nellie and I started posting on social media to show how we were using the money – and raising awareness of disabilities.
'I was determined to show people the beautiful experiences in our life, amid the grief.'
In the midst of Nellie's diagnosis and deterioration, Megan and Tom's son Ozzy, now two, was born in April 2023.
Amniotic fluid sampling at 14 weeks showed Ozzy didn't have MLD and when her brother arrived, Nellie showed her delight with her trademark smile. They share Sunshine as their middle name.
Now Megan intends to show beauty and joy can be found in the darkest places even as they lose more of Nellie.
She says, 'Nellie is sick most days. It is physically challenging and it means life has to be much more structured than we would most likely have lived, but it's such a privilege to be Nellie's parents, we mostly feel grateful.
'I have a gorgeous life, with beautiful children. We have lost friends who don't know what to say to us and I've grieved hard knowing we will lose Nellie, but we don't plan ahead. We focus on the day and if she's happy, so are we.'
Nellie's bucket list
Despite being susceptible to illnesses and infections, Nellie attends a specialist school and with her hospice nurse Emma, based at Chestnut Tree House, in West Sussex, has taken part in dry slope skiing, bike riding and ice-skating, smiling throughout, using specialist equipment such as her off-road wheelchair.
'Nellie understands things but she's not as present as she was and we don't know how long we have left with her,' says Megan.
'When she was diagnosed I wrote a list of things I would miss, but she's now done most of it – going to a specialist school or dressing up for World Book Day and showing us her smiles to express herself.
'While I won't see her get married, have babies or be a teenager, we've shown that a terminal diagnosis doesn't mean you can't live.
'You wouldn't think you could have great years while your child is dying, but you can.'
Nellie's diagnosis has led to Megan's support for choice in assisted dying.
She says: 'I strongly stand by the belief that life is worth living with a terminal illness, this is what we're showing with Nellie and her bucket list and trying to infuse joy into her every day, but I also believe people should have a choice in dying.
'There will be a time where we have to make decisions, for example if doctors come to us and say they can't ventilate Nellie again or we consider her quality of life and decide enough is enough.
'We will do that for our child so why are adults not allowed to decide for themselves?'
Life-saving test
While there is treatment for MLD, it needs to be given before symptoms start. Megan is desperate for MLD to be added to the newborn screening test – the heel-prick test – allowing doctors to diagnose and treat the condition long before symptoms start showing, therefore saving the lives of children like Nellie.
Meanwhile, Nellie's bucket list includes going to the theatre, enjoying a night away with her mother and riding a horse. Supporters have kindly donated or arranged treats for Nellie and the family's biggest wish is for Nellie to enjoy a Disney cruise.
For now, the family are spending their time creating memories together, on family adventures, doing sensory classes or even simply visiting the park.
Megan says: 'It's hard to grieve a child who is still alive, but sometimes that is what happens. I want to give Nellie the best life she could ever have, for as long as we have got her for.
'We do talk about life without Nellie. It feels like an unimaginable place and we mainly say we can't imagine living without her smile or being able to hold her hand, which is agonising.
'However we also know that despite the pain we have to honour her spirit.
'Living and continuing to find joy where we can, just like she has all along, feels like the way we will most strongly honour her.'
