Albie Moore was diagnosed at just four months old with Leber Congenital Amaurosis
A couple have opened up about the heartbreaking moment they learned their baby boy was blind. Albie Moore was born in October 2023, bringing immense joy to parents, Abbie and Lewis.
In the first few weeks, the new parents from Stanford-le-Hope, Essex. noticed concerns with his eyesight but hoped it was simply a delay in visual development. However, after multiple consultations at Great Ormond Street Hospital and Moorfields Eye Hospital, Albie was diagnosed with Leber Congenital Amaurosis (LCA) at just four months old – a condition caused by a rare genetic disorder affecting just one in 80,000 people.
The diagnosis was a devastating shock for the family, admitted 28-year-old mum Abbie, who has shared how deeply it affected them all. Yet, united by their experience, Abbie and her husband Lewis have come together, determined to run the London Marathon—not just as a personal challenge, but as a symbol of hope and support for other parents facing similar journeys.
Abbie recounted: “[Lewis and I] had no idea that we’re both carriers [of LCA] because there’s no family history of severe vision issues on either side.” She added: “So working through our emotions took a while – they were all over the place.”
She reflects on the aftermath of the diagnosis: “We spent quite a while in our own little bubble, with only family. We were nervous of going out for example – as Albie was scared of loud noises.
“It was quite traumatic at the start. We didn’t expect our lives to be turned upside down. But we’ve turned it into a positive. Albie has opened our minds and hearts in a way that we didn’t think was possible.”
Lewis and Abbie are preparing to take on the London Marathon this April to raise essential funds for the Royal Society for Blind Children (RSBC). The charity has been a lifeline for them during a challenging period. As devoted parents, they deeply appreciate the RSBC’s support in navigating life with their 18-month-old son. Lewis, driven by his son’s unwavering spirit, said: “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.”
With the RSBC’s support, the family has discovered new avenues of opportunity, as Lewis explained: “He’s just going to need a little more support to achieve [his plans and dreams], and that’s where RSBC comes in, providing opportunities we didn’t think were going to be possible.”
Abbie, an executive assistant at a law firm, echoed her partner’s sentiments, saying: “It would have been easy to just give up, but through RSBC, we’ve found an element of peace.” The couple’s motivation to push through the 26.2-mile marathon is rooted in their love for Albie and gratitude towards the RSBC. Abbie confessed: “We don’t need any more motivation to go out and run than supporting our son and RSBC.”
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As they juggle training with caring for Albie and their demanding work schedules, Abbie admitted: “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.”
As their training continues, Abbie joked: “It’s going okay, though it could be better!” Despite the whirlwind of their busy lives, the couple stays dedicated to their goal, all for their beloved Albie.
She said: “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.”
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Lewis, an Area Sales Manager at a bank, hopes that by completing the London Marathon, they can provide reassurance to other parents facing similar challenges, reminding them that they are not alone. He shared: “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.”
