Photo credit: Graham Lucas Commons

Henry’s story is one of persistence, happiness, and small but meaningful victories - showing how much strength can be found in everyday moments.

I am Demi-Lea, Henry's mum, and he’s 3 years old. We’re from Lancashire, and Henry lives with X-Linked Ichthyosis.

If I had to describe him in three words, I’d say he’s happy, smiley, and funny. He loves football, playing and watching, spending time with family, and playing with his toys.

What people might not expect is just how big his personality is. Even on the days he’s not feeling his best, he’ll still give you a smile to brighten your day.

Our Daily Routine

One of the biggest challenges is that Henry doesn’t fully understand why we need to constantly apply creams. It can be frustrating and overwhelming for him at times.

But we’ve learned that routine is everything. It’s taken time to find what works, but the mix of creams we use now really helps keep him more comfortable - and we can see the relief when his skin is cared for properly.

More Than “Dry Skin”

A common misunderstanding is that ichthyosis is “just dry skin.”

It’s so much more than that. Every outing takes planning and adjustments to make sure Henry stays safe and comfortable - something most people don’t see.

Photo credit: Graham Lucas Commons

Getting Answers

When Henry was diagnosed, it felt like a weight had been lifted. We knew there was something more going on, and finally having answers meant we could start getting the right support.

The Ichthyosis Support Group has been invaluable - offering guidance, shared experiences, and reassurance when we’ve needed it most.

Facing the World

People often don’t understand what goes on behind the scenes. What I wish they knew is this: behind his skin is a child who feels every look and comment. What Henry wears helps keep him comfortable, and kindness makes all the difference.

Strength in the Small Wins

Living with ichthyosis has taught us to celebrate the little wins. It doesn’t go away, you adapt, and you learn to appreciate the small positives along the way.

Our biggest support has been the Ichthyosis Support Group. They’ve helped us find what works, shared their experiences, and given us opportunities to connect with others who truly understand. Outside of that, we don’t know anyone else living with ichthyosis - so that connection means everything.

A Message From Me

If you look at Henry's photo, I want you to know: His skin may look different, but he’s just a little boy who deserves the same kindness and acceptance as everyone else.

And to anyone newly diagnosed:

Looking Forward

A turning point for us has been understanding that X-Linked Ichthyosis can come with wider challenges. By looking beyond just the skin, we’re now getting answers and making progress to make life easier for Henry.

A Message to Healthcare Professionals:

Please look beyond the skin - X-Linked Ichthyosis can involve wider challenges, and listening to families is key to understanding the whole child.

Photo credit: Graham Lucas Commons

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