For most people, the only silver lining to last year’s lockdown was the chance to get out in the sunshine for their daily exercise or spend time in the garden – if they had one.  

But for 13 year-old Hazel, things were very different. She has a rare condition called Xeroderma Pigmentosa, or XP for short. It means her skin can’t repair the damage caused by ultra–violet light and makes her a thousand times more likely to get skin cancer than the average person. 

If she wants to go outside in the daytime, even if it’s cloudy, she has to wear a UV protective clothing that covers every square inch of skin. But for someone who loves the natural world and wants to explore it as much as Hazel, it’s worth the extra effort. 

 “I really enjoy being outdoors, especially climbing,” she told us.  “Last year I climbed Ben Lomond and I’m planning on climbing Ben Nevis in the spring to raise money for the XP Support Group.” 

Nevertheless, she can sometimes feel isolated. “Most people, if they don’t know me, they do stare because it’s not very normal. XP is so rare you can sometimes feel a bit lonely and that you’re the only one with it.”  

But on those days when she’s at less than her best, Hazel knows she can look to her friends in the XP Support Group for help. 

Dancing in the dark to bring children with XP together.  

One of the many activities organised by the XP Support Group is its Owl Patrol Camp. Held across the course of a weekend,  Owl Patrol brings children with XP and their families together for a fantastic programme of night-time games and adventures.  

“They even had a disco at one of them. It was great fun!” says Hazel. “And when you’re at Owl Patrol, you get to see loads of different people with XP and share experiences with them. You understand what they’re going through and they understand what you’re going through.” 

There are just over 100 people in the UK with XP, and feelings of isolation and loneliness can be just as harmful as the condition itself. That’s why the XP Support Group goes to such lengths to put them in touch with one another and bring them together as often as possible.  

With the support of BBC Children in Need, they can continue to do that, even if it’s only in a virtual sense for now. Just as hundreds of other projects we support across the country are keeping vital support services going during the pandemic.  

Hazel is always grateful for the help the XP Support Group gives her. At the same time, she’s determined XP won’t stop her living life to the full.  

“Just because I have this condition doesn’t mean that I don’t go outside, that I don’t do things that everyone else does. Autumn, for me is amazing. Sunset gets earlier, so I get more time outside. I really look forward to dusk because then I can take my visor off.”  

“And let’s be honest”, she adds. “Quite a lot of cool stuff happens at dusk!”