A mum “consumed by worry” about her baby boy’s future has proudly walked down the aisle with the one-year-old as her ‘unofficial best man’ – and there wasn’t a dry eye in the house
Chloe Davies’ son Louie was born with albinism – a rare genetic condition affecting the production of melanin, the pigment that colours skin, hair and eyes – that can also cause sight loss. At five months old, he was diagnosed with nystagmus, a condition characterised by rapid, involuntary eye movements, that usually causes reduced vision, balance issues and sensitivity to light.
Chloe, 33, of Neath, Port Talbot, Carmarthenshire, says: “Louie had a lot of white hair when he was born and immediately they suspected albinism. After a stressful birth, it was a lot to take in. I felt completely consumed by worry for his future, and a huge sense of guilt. It was like I was failing him, in that I’d somehow given my baby a difficult life before he’d even got started.”
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Then, at eight months old, an eye care liaison officer introduced them to Guide Dogs Cymru, who gave statistical programmer Chloe the hope she needed. She says: “They arranged a home visit and contacted a qualified teacher of the visually impaired and a local habilitation specialist on our behalf. We were also offered counselling support.”
Louie now attends their fortnightly My Time To Play sessions in Gowerton, for children aged four and under with visual impairments, helping them develop key skills through sensory play. They also provide parents with a vital support network. Chloe explains: “The sessions have been more rewarding than I could have imagined. They’ve opened up an entire community I didn’t even know existed.”
Recalling what life was like before they found Guide Dogs, Chloe adds: “I felt like I had to learn everything [about albinism] immediately just to be able to support Louie.” And when they went to a local baby group when he reached four months, she found it painfully isolating.
She says: “Seeing younger babies engaging more, looking around and reacting to things was incredibly hard. I’d drive home in tears. It felt like a constant reminder that Louie might face more limitations and I didn’t really know the best way to stimulate him.”
The Guide Dogs sessions are run by two habilitation specialists, who tailor activities to stimulate all of a child’s senses, while empowering parents with practical ideas to use at home. Connecting with other parents who understand her situation has been a godsend for Chloe.
She says: “Speaking to mums who truly understand what you’re going through is such a relief and seeing older children thriving gives me hope for Louie’s future.” And Louie, who will eventually qualify for a guide dog, is now thriving, too. Chloe says: “He’s standing on his own already. We thought it would take him a bit longer. He’s babbling all the time, so smiley and sociable and has adapted incredibly well to everything.”
The icing on the ‘wedding’ cake came last Saturday, when Louie was centre stage when she married his dad Andrew at Pencoed House Estate at Capel Llanilltern, near Cardiff. Chloe says: “Now, I am embracing this next chapter with open arms and feel excited for our future as a family.
“Louie is happy, curious and thriving, and so am I. That’s something I never thought I’d be able to say. It was a very special moment to have Louie with us at our wedding – our unofficial best man. After everything we’ve been through together, it felt only right that he was up there with us.”
*Fi nd out more about h ow Guide Dogs support children like Louie through their Children and Young Person services My Time To Play here
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