02 May 2024 , 07:12
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A family has been left heartbroken after their baby girl was diagnosed with a rare and incurable eye condition.
William and Debbi Oviatt first noticed something was amiss with their daughter Sofi's vision when she exhibited difficulty tracking objects in baby classes and had an unusual wobble in her eyes.
At just six months old, Sofi was diagnosed with retinal dystrophy, a genetic disorder that affects the retina's light-sensitive cells and is exceptionally rare in children.
William, who works at the Thistle Foundation as Head of Business Development and Income Generation, described the moment they received the diagnosis from the consultant as "heartbreaking". He recounted: "The first appointment with the consultant was heartbreaking, as we were told the devastating news that Sofie has visual impairment and that there was nothing they could do, as no treatment would help Sofie's eyes."
Sofi has an eye condition that affect the light sensitive cells in the retina (No credit)
William, Debbi and Sofi are pictured together (No credit)The diagnosis was particularly tough to accept given Sofi's young age and otherwise typical behaviour as a happy baby. William expressed the emotional turmoil the family went through: "For Sofie to be given this life-changing news at such an early age was extremely hard to take. It was such an emotional, confusing time, Sofie was just a typical, happy, baby so it was difficult to comprehend why this was happening to her."
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"But after that, we were just left to it, we had been given the information by the doctors but were offered no help of what we should do next," reports Edinburgh Live.
"So we reached out to various charities to try and build relationships and get a better understanding of what we were facing and what we could do to help Sofie."
William and Debbi turned to Sight Scotland for support, and in gratitude, William is set to run the Edinburgh marathon to fundraise for the charity.
He added: "Discovering that your child has visual impairment is heartbreaking and can cause a whirlwind of emotions, and we are just so thankful we had Sight Scotland there to help and support us. On Sunday 26th May, I'll be running twenty-six miles in the Edinburgh Marathon to raise funds for Sight Scotland and to support children like Sofie who are visually impaired, blind or suffer from sight loss."
"Sight Scotland has been amazing; the charity has a real community and family feel. The emotional support has been just so important, just having someone to talk to, who understands what we are going through, has been invaluable. We are in a club that we didn't want to be in, but we are now so proud to be in it. Whether it is signposting, listening, supporting or the policy group giving us a voice, they are always there to answer our questions and fill in the gaps. There is no way we would feel so strong if it wasn't for Sight Scotland."
William shared: "This is why I am running to raise money for Sight Scotland, as the support they have given to Sofie, and to Debbi and myself, has been life-changing, and I can't thank them enough and want to give something back." To sponsor William's Edinburgh marathon run, head over to Just Giving. Discover more about Sight Scotland at sightscotland.org.uk.