More on KentOnline
More on KentOnline
Four-year-old Olivia Wilkes has defied the odds to start school, despite being hampered by a rare genetic disorder.
The Greenhithe resident has Kabuki Syndrome - a rare, multi-system disorder which affects one in 32,000 people and is characterised by growth delays, coordination issues and skeletal abnormalities.
Yet she has overcome those setbacks to start at Cherry Orchard Academy in Ebbsfleet - where she will enjoy both special needs and mainstream classes.
Mum Leanne Wilkes said it was not initially clear what the cause of Olivia’s condition was, and it was some time before she was properly diagnosed.
“I have Type 1 diabetes which meant I was classed as high risk during pregnancy, so had lots of scans,” she said. “These showed extra amniotic fluid – common with kids with various disorders, I now know, but at the time it was put down to Type 1 diabetes.”
Other issues were put down to the fact Olivia was premature, but Leanne and husband Robert remained concerned.
“While in special care, the doctor was concerned she was floppy and mentioned something about her chin,” added Leanne.
“It was as though she didn’t have one and she looked quite cartoonish, tiny with big eyes. Olivia had fits too.”
But it wasn’t until she was nearly three, Olivia was referred to a genetics doctor and diagnosed with Kabuki Syndrome.
Leanne said there is a spectrum for those with the condition, some who cannot walk or talk, while some lead a fairly normal life.
She added: “Olivia had a cleft palate operation at three years old, which was done to try and help the foundations of her speech. This was four hours long. It was testing for the whole family seeing such a tiny little thing put to sleep and wake up in such crying pain when she would usually be such a happy little person. Her sister also missed her very much.”
Despite her challenges, Olivia’s a fun, cheerful child. “She’s the happiest little thing and so well behaved,” said Leanne. “She plays perfectly well with her little sister Evie but has a confidence issue with other children.”
Olivia will get speech therapy and special needs teaching at school but then join the other children for other subjects.
Specialist charity Kabuki UK has provided a tablet which has helped Olivia’s speech, and offers further support through its annual family day. Jeans for Genes charity has provided funding for the Kabuki UK charity.
