ELLA’S CHANCE TO WALK
Herdevoted parentsstage aspecialparty
Dressed in her favourite fairy tutu, Ella Yearbury clutches a golden pint-sized walker that steadies her balance, her tiny tootsies strapped into leg braces so she can stand flat-footed.
She slowly takes a few steps forward and laughs in glee because for the sweet four-year-old, it’s a special moment.
Ella, who has cerebral palsy and epilepsy, was robbed of her ability to use her legs after a serious stroke at three days old. But now the Mangere-based tot is just a fairy-step away from being able to run after her
18-month-old brother Frankie or dance to her favourite Ed Sheeran songs, thanks to surgery in the US next month that will help her walk freely.
“Ella’s first concert was with Ed Sheeran and she kicked around in Mama’s tum listening to ‘Small Bump’,” tells her mother Kat, 34, who was recently gifted a signed guitar by the UK singer to help with fundraising for her daughter.
Now the guitar – along with boxing gloves signed by Kiwi champion Joseph Parker and a Jacinda Ardern-signed bottle of Glenmorangie whisky, the Prime Minister’s favourite tipple – will be auctioned at a fairytale ball
organised by Ella’s family.
The Auckland-based extravaganza is one of many attempts by Kat and her auto-electrician husband Brett, 36, to raise $150,000 for their daughter’s selective dorsal rhizotomy operation, taking place exactly five years to the day she was born.
On May 3, 2013 – one year after Kat and Brett’s first daughter Emily was tragically stillborn – Ella’s battle began when she arrived into the world 15 weeks early and weighing just 800 grams.
Then at just three days old, Ella’s life took a terrifying turn when she suffered a severe brain bleed or stroke, with doctors warning the outlook was grim.
Miraculously, Ella pulled through and at six days old, she fought through emergency bowel surgery, before finally opening her eyes four days later. However, the tiny bub’s battle didn’t end there. She was suddenly rushed into surgery to alleviate pressure on her swelling brain, miraculously pulling through not once but twice.
After 122 days in NICU at Auckland and Middlemore Hospitals, and over a week
in Starship’s neurosurgery ward, Ella was finally brought home two weeks on from her original due date.
Ella was diagnosed with cerebral palsy as a result of her stroke, so the tot and her family have since been caught up in a whirl of daily medicines, physiotherapy, speech lessons and broken sleep.
The fairy-loving girl also suffers epilepsy and hydrocephalus, a build-up of cerebrospinal fluid in the brain for which she requires a shunt in her head. She has endured 18 operations and earned more than 650 beads of courage.
“At the moment, she’s right up on her toes and has no ability to be flat-footed,” explains Kat, who describes her beloved daughter as social, curious and a joker. “For this surgery, they’ll be cutting the nerves in her spine that are causing the tightness in her legs.”
The devoted mum is always there to comfort and nurse Ella. She runs Epsom salt baths and gives lavender massages to ease the pain when her daughter wakes at night with spasms and cramps.
When Ella does drift back to sleep in her parents’ bed – where she stays so they can monitor her seizures – mum Kat is often up for more hours to work on fundraisers and update the Fairy Steps 4 Ella Facebook page.
Kat’s efforts include a planned attempt to break a Guinness World Record for the most fairies in one location, to be filmed live in Manukau by children’s TV show WhatNow. “We did an attempt in February but didn’t break the 872 record because of a storm,” explains Kat. “We had hundreds of soaked fairies with damaged fairy wings, but it was a lot of fun.”
Comeon,fairies!
Hoping to gather 1000 fairies for the April 15 attempt, Kat laughs that Ella’s favourite part about the event is having her dad in costume. “It’s great seeing all the guys dressed up as fairies to help out a little girl. Her brother Frankie also has his own fairy tutu.”
Brett, who describes Ella as cheeky, says the hardest thing for his girl is that her brother is walking around and she isn’t. “This surgery is the best chance she’s got to walk,” he explains. “The professionals predict she’ll be able to walk unaided after surgery, but it’s going to take lots of rehabilitation.”
Like Brett, Kat has faith that Ella will continue to fight the odds after her surgery with paediatric neurosurgeon Dr TS Park, who has performed over 3600 operations on adults and children.
“This is finally the chance she’s getting to be able to walk,” Kat concludes. “We can’t wait to see Ella grow her wings and take those first steps.”