Abbie and Lewis's story

Albie was born with severe sight impairment, having been diagnosed when he was 4 months old. His mum and dad, Abbie and Lewis, are both running the 2025 London Marathon to raise funds for the RSBC – the first time that two parents of a child supported by the charity have run together at this famous challenge event. 

Abbie says:  

“We’re running the 2025 London Marathon because we wanted to do something as a bit of an escape after Albie was diagnosed as blind. It’s something we can use to channel all our emotions into – raising money for a charity that will be a big part of our lives, and one that we’ll always be thankful for. 

Albie was born blind due to a genetic condition. At around 3-4 weeks, we noticed that something didn’t seem right with his vision, and a GP check at 8 weeks highlighted that there was an issue. We were hoping that it was simply a case of delayed vision, but at 4 months old, and following appointments at Great Ormond Street Hospital and Moorfields Eye Hospital, we were told that he was severely visually impaired. 

The diagnosis was a very rare eye condition called Lebers Congenital Amaurosis (LCA). We had no idea that we’re both carriers because there’s no family history of severe vision issues on either side. 

Working through our emotions took a while – they were all over the place. We had gone through specialist appointments, waited for results that never went the way we hoped, and then had to try to accept Albie’s diagnosis. We spent quite a while in our own little bubble, with only close family. We were nervous of going out, especially as Albie was scared of loud noises.  

Now, though, we’re ready to face the future, and the marathon will be massive for us – it’s going to be an incredible challenge, especially as neither of us have run one before! Initially, it was just going to be me taking part, but Lewis has always wanted to do it. As it’s for Albie, he decided to join in too. 

Our training’s going OK, though it could be better! We’re juggling busy lives at work, and obviously we have Albie to look after too, so we’re a bit of a tag team at the moment, training whenever we can. The wonderful thing is that when Albie’s older, we can tell him what we did to support RSBC. 

Because we know that RSBC will play a huge part in Albie’s life, we want to give something back by completing this challenge. We feel such a connection with the charity, and the people we’ve met there are amazing. 

We first contacted RSBC in May 2024 when we were looking into support for Albie. We were shown round their Life Without Limits Centre (LWLC) in London, and it felt just like home to us. It seemed so safe there, and the facilities available for children with vision impairment are fantastic.  

We know that we’re going to need some guidance, and that RSBC can provide it. The charity is going to play a massive part in Albie’s life, because it helps blind children reach their full potential through developing their confidence and independence. We’d like Albie to take part in the activities they hold and build amazing lifelong friendships. 

We’re both pretty tech-minded and the LWLC has amazing technology, including a media studio. It was actually pretty mesmerising, and we’d love Albie to have the best possible technical skills as he gets older. There’s also a kitchen area where children learn to cook, which will be invaluable as we want him to be as independent as possible. 

RSBC is such a campaigning voice for vision impaired children, too. When we visited the LWLC, one of the team was heading off to Parliament to contribute to discussions there. You could see the dedication of the RSBC team and, for us, it was clear that Albie would benefit from being a part of things. We were so pleased to know that we’re not the only people fighting for our boy. 

We’ll definitely make use of RSBC’s services in the coming months. We need to start stepping out of our comfort zone! We’re sent invitations to their events, like family fun days. Albie’s still quite young, not quite 18 months old, and his frustrations have sometimes ended up as meltdowns, so we haven’t been to any yet. But he’s now starting to find his own character, and it’ll be a real advantage to us to go along to sessions with him. For example, RSBC has had animal experience days where the children get to meet and hold pets like guinea pigs, chinchillas and even snakes, and that’s something we’d really like Albie to experience. 

We didn’t expect our lives to be turned upside down, but Albie has opened our minds and hearts in a way that we didn’t think was possible. It was quite traumatic at the start, but we’ve turned it into a positive. It would have been easy to just give up, but through RSBC, we’ve found an element of peace. We don’t need any more motivation to go out and run than supporting our son and RSBC.” 

Lewis says:  

“To anyone who finds themselves in a similar situation, hang on in there, because every day you do feel stronger. We’re all in this together, supporting each other, so you never need to feel that you’re alone. Even if you feel that you’ve taken a step back, you go forward again, fighting for your child – all the work you do is for them and their future.  

There are no limits to what Albie will achieve, and we’re determined to give him the life we dreamed of. He’s our inspiration, and there’s nothing we won’t do for him. Although we didn’t expect this, our boy’s plans and dreams are all still within his reach. He’s just going to need a little more support to achieve them, and that’s where RSBC comes in, providing opportunities we didn’t think were going to be possible.”