Helping to make a difference for his son and other children

Nathan’s taking on three running challenges to fundraise for RSBC – the Tatton 10k, the Manchester Half Marathon, and the Chester Marathon.

Nathan and his wife, Jessica, have a son, Alfie, who was born with albinism. It’s a genetic condition which causes a lack of pigment and, like many people with albinism, Alfie has difficulties with his vision. When the couple were told about Alfie’s condition, they felt a whirlwind of emotions.

But through their determination, help from local services and support from their hospital, he’s been able to thrive. We spoke to Nathan to learn more about Alfie, and why he’s fundraising for RSBC.

 

Could you tell us a bit about yourself and Alfie, Nathan?

I live in Warrington with my wife, Jessica. Alfie was born in May 2023, and his albinism came as a bit of a shock, because no one in our families has the condition.

When Alife was born with white hair, we didn’t really think anything of it. But within 30 minutes, the midwife said she suspected he had albinism. As time progressed, we began to notice a few other signs. He has nystagmus (a rapid, involuntary and repetitive movement of the eyes) and then, in some lights, his eyes reflect back red. You also see red in his eyes in some photographs, and he’s got white eyelashes.

We shed quite a few tears at first following his diagnosis, as it was all quite overwhelming. We’ve spent a lot of time at Warrington hospital with Alfie, and they’ve been amazing. We’ve had regular checkups with doctors, ophthalmology teams, and opticians. He’s worn glasses since he was six months old, which really has helped him. Alfie has photophobia as well – sensitivity to light – and he’s got sunglasses to help him. But he’s doing really well now, and walking around freely.

We’ve been able to connect with another family in Liverpool whose daughter has albinism. It’s been great – it’s always nice to speak to people who are in a similar situation.

 

How did you find out about RSBC?

When I was choosing a charity to run for, I saw that RSBC supports blind children, and I just knew straight away that this was the cause I wanted to run for. Obviously, what RSBC does is really close to our hearts and it felt like the right fit. Alfie was the reason I signed up to the races, and RSBC resonated most with that.

 

Why did you want to run the three events?

They’re all fairly close to where I live: the Tatton 10k, the Manchester Half Marathon, and the Chester Marathon. I don’t really know why I picked three, but I suppose they’re a natural progression! You’ve got the 10k, then the half marathon at 21k, and then the full marathon at 42k. I thought doing three distances would be a unique challenge and something a little bit different.

 

Tell us about your running journey so far.

Well, last September I started running casually, and began to enjoy it. Then, from October, I started increasing my distances and the variety of my runs. Once I started buying trainers and running equipment, I knew I had the running bug! Now, in an average week, I’d say I do a total of four or five runs. I’m really enjoying them, and I think that’s important. Obviously, the main reason I’m doing it is for Alfie, and also to raise some money for RSBC.

There’s one song that reminds me of Alfie – when he turned one last year, I created an Instagram reel with pictures and videos of him and set it to ‘Over the Rainbow’. Now, I always put it on my playlist and set it to come on towards the end of a run, because it reminds me of Alfie and the reasons why I’m running, and that pushes me on. Jess and Alfie came to the Tatton Park 10k when I ran for RSBC, and it was really nice to have them both there when I passed the finish line.

 

Have you found that people make assumptions about children with vision impairment?

I haven’t found it to be too bad. We have had some difficult comments, though – things like, “He looks like the Milky Bar Kid.” I don’t believe people mean it maliciously, but I inside I’m saying, please just think before you open your mouth.

When Jess took Alfie to a class once, somebody said, “Oh, Alfie looks like Elton John”. Again, it’s not really an insult, but it’s not a compliment either. And we’ve had a few people say looks like Harry Potter and stuff. Although that doesn’t really get to me, it probably gets to Jess more. I sort of brush it off. I think, well, I’m sure they don’t mean anything by it, but I just wish people would think before they speak.

 

What would you say to someone who’s in the same situation as you and your family?

I’d say that speaking to other people in the same situation definitely helps. Never suffer in silence – reach out, because there’s a community of people and services who are there for you.

 

Is there anything else you’d like to add?

Just that it’s my pleasure to represent RSBC in these challenge races. The money I’ve raised has exceeded my expectations, which is amazing! I think that, because it’s something so personal to us, other people have connected with the story. I’m really looking forward to the Manchester Half Marathon, which isn’t far off at all.

 

To donate to Nathan’s RSBC fundraiser and help children like Alfie, head to his JustGiving page here – Nathan Egan is fundraising for Royal Society for Blind Children