Photo credit: Graham Lucas Commons

Robyn’s story is one of joy, resilience, and possibility - proof that with the right support and a lot of determination, children with ichthyosis can live life boldly and without limits.

I am Leanne, Robyn’s mum, and if I had to describe her in three words, I’d say she is funny, loud, and caring.

We’re from Manchester, and Robyn lives with Netherton Syndrome (SPINK5-sEDD) - but that’s only a small part of who she is. She loves everything life has to offer: meeting new people, reading, riding her bike, going on holiday… she throws herself into it all.

What might surprise people most is just how resilient she is. She’s a true fighter - nothing holds her back.

Our Daily Routine

Our mornings don’t start the way most families’ do. There’s a lot to fit in - bathing, exfoliating, combing her hair - all before she can head out and just be a child who wants to play and explore.

We manage her skin with twice-daily baths, constant emollients, and keeping her skin well moisturised. It’s a routine, but it’s part of our normal.

People often misunderstand ichthyosis. Many assume it’s sunburn or severe eczema, especially when we’re abroad. But it’s so much more than that.

Photo credit: Graham Lucas Commons

Diagnosis and Letting Go of Fear

Robyn was diagnosed at one year old. At first, it was a relief to finally have answers and access to the right support. But alongside that came worry - about her health, her future, and what life might look like for her.

What’s helped her thrive is something we’ve held onto ever since: we don’t hold her back.

She tries everything - holidays in the sun, new foods, muddy adventures, swimming, bike rides. She falls, she gets back up, and somehow, her skin heals faster than you’d expect. She lives fully, and we make sure she always can.

Facing the World

People are often unsure or curious when they see Robyn’s skin. What I wish they understood is simple: children like Robyn are incredibly strong and brave. There’s a strength in her that shines far beyond what anyone sees on the surface.

Strength, Support, and Milestones

Living with ichthyosis has taught me what true strength and resilience really look like, and I see it in Robyn every single day. Our whole family are extremely proud of her.

Our biggest support has been the Ichthyosis Support Group (ISG), a community that understands, supports, and brings families together in ways that truly matter.

One of the most powerful moments in our journey has been watching Robyn reach milestones we once weren’t sure she would. Each one is a reminder of how far she’s come.

A Message From Me

When you look at Robyn’s photos, I want you to know this: She is cheeky, funny, amazing, and full of attitude.

And if you’re at the start of your journey with ichthyosis, wondering what comes next:

My Message to Healthcare Professionals:

Please build a broader understanding of skin conditions and recognise that caregivers often know their child best.

Photo credit: Graham Lucas Commons

Photos from the Faces of Ichthyosis photoshoot, kindly funded by the British Association of Dermatologists.