Toddler told she would never walk is taking strides to raise money for charity
When two-year-old Frankie-Rae Hockney took her first shaky steps across the living room carpet, her mother burst into tears.
Although watching a child walk for the first time is an emotional moment for any parent, for Mary-Ella Tuppenney-Hockney it was a milestone she never thought her daughter would meet.
Frankie-Rae was born with a rare chromosomal anomaly called 17p13.1 microdeletion syndrome, of which there are only 21 known cases.
She also suffers from hypermobility (extreme flexibility) in her feet, ankles and knees, and a high-arched palate meaning she found it difficult to swallow food.
As a result, when she was born Mary-Ella, 36, and dad Ben Hockney, 37, were warned that she may never walk or talk.
“Doctors explained that they only had five different case studies who had the condition and so there were lots of uncertainties about her future,” Mary-Ella told The Mirror.
“We both broke down in tears not knowing what life would hold for her.”
“I’m a dance teacher and I run my own dance school in Oxfordshire and so dancing is a huge part of our lives,” she added, “It was heart-breaking to think that Frankie-Rae would never be able to be part of that.”
However, Frankie-Rae quickly began seeing experts in physiotherapy and occupational health as well as many paediatricians and a liver expert.
“Despite all her problems she grew into such a happy, smiley little girl who loved listening to music and swaying along to it,” said Mary-Ella.
“Because she couldn’t walk as she got bigger we needed a special wheelchair pushchair and the one available on the NHS wasn’t suitable for her needs.”
Fortunately, The Carter Trust stepped in to give Frankie-Rae one that worked.
“It meant we could take her shopping with us on weekends and out to the park. It made such a huge difference to her and our family but I felt guilty for taking the money from the charity.”
That’s when Frankie-Rae’s elder sister Georgie-Ellyn, eight, came up with the idea of fundraising for the charity that helped them.
The family rallied together, organising a mediumship night and a raffle, and Georgie-Ellyn even made loom band bracelets to sell.
However, the most important part involved Frankie-Rae; a fundraising challenge for the toddler to practice walking for the month of June.
“On June 1st I set up a page for her called Ultra rare Rae-Rae and a Crowdfunder link and posted details of the challenge on social media,” explains Mary-Ella.
“And every day we cheered her on as she took a few wobbly steps either unaided or using her walking frame. One day she managed 15 in total, which is incredible.”
So far Frankie-Rae has raised over £1000 for the Carter Trust and the family is keen to break their target of £2000.
“Frankie-Rae is such a smiley happy little girl and brings joy to all that meet her,” says Mary-Ella.
“She relies on splints on her legs to support them and although she understands everything we say she doesn’t talk much, but she can say Mum and Dad.
“She’s been diagnosed with global developmental delay so we don’t know if this will improve as she ages.”
“She’s a very determined little girl though, who loves music and loves nothing more than swaying to the music at the dance studio.”
“Of course, I worry about the future,” revealed the mum-of-two. “But after her diagnosis doctors said she would probably never walk and talk, so she’s already proved them all wrong. “And with her determination, I have no doubt she will continue to surprise us all!”