The Superpowers of Miss Lillie and Her Mum Emma

22 April, 2026

The Superpowers of Miss Lillie and Her Mum Emma

Words by Leslie Mello

In this article, Lillie Dodd and her mum Emma tell us how they tackle Lillie’s rare diseases, double stomas, and daily care needs with humour, grit, and an irrepressible smile.

Every superhero has an origin story

Lillie Dodd loves superheroes, and her favourite is Spider-Man. It makes sense. Like Lillie, Spider-Man is funny, brave, and quietly determined, even when things get hard. And he didn’t get his powers because life was easy. He got them after something unexpected changed everything.

Lillie’s “origin story” began before she was even born. She has a genetic anomaly – a duplication on chromosome 19 – so rare that she is the only person in the UK registered with it. Her condition doesn’t even have a name. Instead, it’s written as a long line of letters and numbers: 19q12,30,765,107–31,823,229×3. It means little to most of us, but it shapes every part of Lillie’s life.

Chromosome 19 plays a key role in smooth muscle function, particularly in the bowel and bladder. Alongside this rare duplication, Lillie also lives with type 1 diabetes, autism, learning disabilities, speech delay, and anxiety. Together, these conditions require constant management and specialist care.

Emma, Lillie’s mum and full-time carer, has her own superhero backstory. She cares not only for Lillie, but also for her husband Phil, who has a degenerative spinal condition. Her days are filled with hospital appointments, medication routines, alarms, forms and phone calls – the kind of vigilance that can make every week feel relentless.

Ask Emma what her superpower is and she’ll say it’s persistence.

“The ones who speak loudest and most often get heard.”

She has learned to chase appointments, follow up test results and question delays – because if she doesn’t, things get missed. Tests don’t happen, appointments drift, and support slips through the cracks. Incredibly, she remains polite throughout, something anyone who has navigated the healthcare system will recognise requires superhero strength.

When people say, “I don’t know how you do it,” Emma answers simply:

“I do it because I don’t have a choice.”

She doesn’t see herself as heroic. She gently challenges the idea that coping is a virtue, pointing out that it masks exhaustion and the weight of navigating systems that make caring far harder than it needs to be. She uses superhero strength daily – but in a better system, she wouldn’t have to.

Meet the stomas: Dave and Wendy

When I first met Lillie and Emma over Zoom, I shared my own stoma story – waking up after emergency surgery to find a bag I hadn’t expected, and how reading others’ experiences helped me feel less alone. Lillie listened carefully, then shared joyfully:

“My stomas are called Dave and Wendy!”

Lillie has two stomas. Her colostomy is Dave. Her urostomy is Wendy – or, as she cheerfully calls her, “Wee Wendy.”

When I asked whether naming stomas was important, Lillie said yes, “because it’s fun.” Naming turns something clinical into something personal. When Dave is “naughty,” it’s because “he’s a boy and boys are naughty.” Wendy behaves better because she’s a girl. This humour transforms something overwhelming into something she can laugh about.

Lillie’s advice to anyone facing stoma surgery is direct:

“Be brave.”

She said it’s hard to explain bravery in words. Sometimes it’s simply accepting what’s happening and taking care of the next thing.

Dave’s beginning – when “managed” doesn’t mean “fixed”

Dave was formed in December 2020, just before Christmas and in the middle of the COVID pandemic. Lillie had lived for years with severe chronic constipation. Medications and procedures were tried, but eventually the family reached what Emma calls “the end of the line.”

A stoma doesn’t always “fix” a problem – sometimes it helps manage something that can’t be fixed. For Lillie, the colostomy allowed bowel output to move, bringing an essential improvement in quality of life.

But “managed” doesn’t mean easy.

Over time, new issues emerged. Lillie began passing large amounts of mucus rectally. In August 2025, she underwent major surgery to remove her rectum. She spent two weeks in hospital, this time in adult care, with Emma by her side.

Dave remains unpredictable. Over the past year, Lillie has experienced what the family call “explosions” – sudden, dramatic emptying often preceded by severe cramps. Afterwards, the pain eases, but during it the experience can be painful, frightening and exhausting.

These episodes also affect Lillie’s diabetes. When her bowel rushes, her blood sugars can drop rapidly, requiring close monitoring and intervention. Managing interacting conditions creates a unique fatigue, because the issue is never just one thing.

Wendy’s rescue – no more tubes down the leg

If Dave’s story is complicated, Wendy’s is, in many ways, a success.

For years, Lillie lived with a neuropathic bladder. Treatments escalated from medication to Botox injections and finally to a suprapubic catheter. For seven years she underwent general anaesthetic every twelve weeks for catheter changes. Eventually she needed a leg bag on constant free flow which was uncomfortable and visible.

Then came repeated blockages. The catheter clogged with mucus and tissue. Emma flushed it several times a day. School staff did the same. When it fully blocked, Lillie was rushed to hospital for painful emergency treatment.

“There was no quality of life,” Emma says.

In January 2022, surgeons created Wendy through an ileal conduit urinary diversion. The operation lasted seven and a half hours and was followed by serious complications: ileus, severe vomiting, electrolyte collapse, seizures and time in a High Dependency Unit. Emma lived through this alone due to COVID restrictions and still describes it as traumatic. Lillie thankfully remembers little of it.

Today, Wendy is “very well behaved.” Lillie can empty her bag herself, giving her independence.

“Better! No more tube. I can wear whatever I want.”

The comfort, dignity and freedom Wendy has brought are a huge relief and a small victory in the number of battles Lillie and her mum face every day.

The smile that inspires a community

Another one of Lillie’s superpowers is her infectious smile.

Her Facebook page, Miss Lillie’s Journey, has more than 6,400 followers – her “fans.” Emma shares hospital updates alongside everyday moments: dogs, café trips, boredom, bravery and life in between. On Rare Disease Day she described Lillie as “Rare, unique, inspirational,” before returning to what defines her:

“Yet that famous Lillie SMILE shines through.”

The support goes both ways. Living with a rare condition can be isolating, but online Lillie and Emma have created a space where others feel understood. Lillie sometimes shares openly when she’s in pain or exhausted – a reminder that being inspirational doesn’t mean pretending to be fine.

Love, friendship and everyday joy

Lillie’s life isn’t only hospitals and care plans. She has a boyfriend, Stephen, and they’ve been together for seven years. Stephen also has additional needs, so when they go to cafés or the cinema, Emma is always nearby to support them both.

Many people with stomas fear they won’t be loved. Lillie’s story challenges that. Her stomas are part of her life, not the end of it. Stephen makes a point of asking after Dave and Wendy – something Lillie clearly appreciates.

One of the highlights of Lillie’s life came in 2019 when she was granted a Make-A-Wish trip to Disney World in Florida for her 15th birthday. The family stayed at Give Kids The World Village, and everywhere Lillie went she wore her special lanyard as a “wish child.” Mickey Mouse was – and still is – her absolute favourite. Years later, she still talks about Mickey with the same excitement.

She also loves music (from Olly Murs to Mr Tumble), sensory lights, Roblox, Disney films and animals – especially giraffes. She has two dogs: Rufus, a gentle black lab who comforts her when she’s unwell, and Lola, a springer spaniel who bounces through life waiting to play.

Lillie is excited about becoming an auntie soon. Her sister Hannah is expecting a baby boy and is moving close by. The family is tight-knit and hands-on, and Hannah has made one thing clear: Lillie will always be looked after. Emma calls this “true girl power” and agrees that learning not to do everything alone is also a superpower.

Your superpower can be small – and enough

If Lillie’s superpower is her smile, Emma’s is her refusal to be ignored. Her message to carers is clear:

Be the nuisance if you need to be. Be firm. Be polite. Keep ringing. Keep pushing. Because quiet doesn’t always get heard – and your person deserves to be heard.

Lillie and Emma’s story reminds us that superpowers don’t always look dramatic. Sometimes they look like naming the hard things, asking for help, making the next phone call, or booking a cup of tea and cake with a best friend.

And sometimes, they look like a smile that keeps shining – even when life is hard.

Support From Colostomy UK

We offer a wide range of support for people living with a colostomy, including our free Stoma Helpline, live chat support, and opportunities to connect with others through local and online groups. We also provide trusted information and resources to offer practical advice, reassurance, and the confidence to live well with a stoma: colostomyuk.org/support