A TODDLER born with an extremely rare disorder and told she might never walk is defying the odds by taking part in a challenge for charity.
Mary-Ella Tuppenney-Hockney’s daughter, Frankie-Rae, was three months old when doctors at the John Radcliffe Hospital said she was just one of 21 known cases with 17p13.1 microdeletion syndrome.
The wider condition has various strands, with Frankie-Rae missing a part of a chromosome.
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She has hypermobility in her feet, ankles and knees, in addition to microcephaly (meaning she has a smaller head than other children her age), and a high-arched palate, which makes swallowing food difficult.
Initially, medics said Frankie-Rae may never walk or talk – however the two-year-old from Kidlington has brushed aside those early predictions by raising money for charity in a walking challenge.
Mrs Tuppenney-Hockney, a 36-year-old self-employed dance teacher, said: “We didn’t find out until she was three months old, they did lots of blood tests and found she was missing a part of a chromosome.
“All the hard work that we put in, and the medical team, makes us determined that she’ll be the best person she can be.
“She’s a very determined young girl, she absolutely loves dancing and dances all day, every day.
“She makes everyone smile, and she keeps reaching and trying until she succeeds.”
The family managed to get a specialised wheelchair and pushchair from The Carter Trust, a charity which supports disabled people with specialist equipment and transport.
For the last four weeks, the Kidlington family has been raising money for the charity, with Frankie-Rae at the heart of the mission.
Mrs Tuppenney-Hockney said: “This piece of equipment was very expensive and without the charity’s help, we could not have got it for her.
“It’s for this reason that we have been tirelessly working hard to raise money to give back to the charity to say thank you.
“We as a family have held many different events over the last four weeks to raise money, our eldest daughter Georgie-Ellyn has been selling loom band bracelets and has managed to raise £160 on her own.
“Frankie-Rae is doing Steps to Success over four weeks. This is a win-win for her as it’s more practice for her and raising money at the same time.”
Frankie-Rae also suffers with liver and kidney problems, and is set to have a liver biopsy in Birmingham at the end of the month.
“Everything is unknown with Frankie-Rae, all the various medical teams involved with her are amazing and on top of all her needs, but at the end of the day her development going forward is unknown and just a waiting game,” said Mrs Tuppenney-Hockney.
To donate, please visit: crowdfunder.co.uk/p/frankie-raes-first-steps-to-success
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This story was written by Liam Rice, he joined the team in 2019 as a multimedia reporter.
Liam covers politics, travel and transport. He occasionally covers Oxford United.
Get in touch with him by emailing: Liam.rice@newsquest.co.uk
Follow him on Twitter @OxMailLiamRice
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