14 October 2023 , 06:16
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A boy who says the "world makes him wobble" has been diagnosed with a rare genetic disorder which can cut life expectancy.
Krystal Moore and Ben Robinson noticed their son Oliver could "not run very well" from the age of three. They further spotted issues with his balance after watching his friends develop at preschool. After facing delays to get him seen due to Covid, the concerned parents were referred to a paediatrician and doctors who diagnosed him with ataxic cerebral palsy. However the couple from Wirral, Merseyside, were convinced the diagnosis did not align with what Oliver, now seven, had been experiencing.
Krystal said: "Cerebral palsy is something which happens from birth, however, Oliver met all of his milestones and we weren't convinced he had it. But we went with it, as that is what doctors said." Oliver was later seen by paediatricians at Alder Hey Children's Hospital and his parents explained to doctors how they did not think he had ataxic cerebral palsy. Doctors then decided to carry out a genetic test.
Parents Krystal and Ben with Oliver and Charlie (Krystal Moore)The seven-year-old was diagnosed with a rare condition called friedreich's ataxia in September last year and Krystal and Ben said "their world fell apart", reports Liverpool Echo. The inherited condition causes slow, progressive loss of muscle coordination, slurred speech, weakness and sensory loss. According to the NHS, the symptoms of friedreich's ataxia usually get gradually worse over many years. People with the condition tend to have a shorter life expectancy than normal. Many people live until at least their 30s, and some can live into their 60s or beyond.
Krystal said: "For now, the symptoms present is he is uncoordinated. He struggles with his fine motor skills such as writing because that grip is not there. He also has issues with his large motor skills, he can walk around, however gets quite tired over longer distances bless him. He's really prone to falls due to being uncoordinated. He says to me 'the world makes me wobble, my legs are so wobbly'." However, Oliver, who is a big brother to Charlie, five, does not let his condition stop him.
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Krystal added: "Oliver loves anything to do with animals and goes horse riding every Tuesday. He loves the outdoors, even though he still struggles he is very active and always outdoors. He finds it difficult, but does not let it stop him. Oliver is such a happy little boy." Krystal and Ben are now taking on the challenge of running the London Marathon next year for Ataxia UK - the leading national charity for people affected by any type of ataxia. Krystal said the couple wanted "to do something big" to help raise money for the charity, which will in turn help other families like them. The London Marathon in 2024 falls on the weekend of Oliver's birthday and the couple's two boys will be there cheering them on. Krystal and Ben have set up a GoFundMe page where people can donate to Ataxia UK. To donate visit here.