Finding her feet JADE’S MIRACLE SURGERY
Thisplucky girlstepsinto hernewlife
Little Jade Beattie loves ponies and dressing up as much as the next eight-year-old. But behind that adorable smile is a brave battler who has been through the toughest of times.
Jade was born in Auckland at just 28 weeks with spastic diplegia cerebral palsy, a debilitating neuromuscular condition that causes her leg muscles to stiffen, making walking extremely difficult and almost unbearably painful.
Relying on a walking frame for short distances and a wheelchair for longer stints means Jade has missed out on many of the adventures and activities that define a Kiwi childhood.
“All she wanted was to be out with the other children, climbing trees and running about,” tells mum Megan, 32. “Instead, she was confined by her legs.”
Jade found it difficult to stay upright, even on flat ground, and simply being in a stressful environment could cause her to stiffen up, lose her balance and fall.
Heartbreaking as this was, Megan and her construction manager husband Mark, 36, realised their bubbly daughter always found a way around things, such as cheerfully dancing on her knees when the mood struck.
And while Jade didn’t have the balance to stand and hit a ball with a bat, she has always been happy being on the sidelines, ordering people around like a tiny coach.
“She definitely made up for it with her bossiness!” laughs Megan.
But when the youngster’s condition started to deteriorate, Megan and Mark – whose unwavering dream has always been for Jade to live a fulfilling life – knew that they had few options. Without expensive surgery, their adorable little girl was facing life in a wheelchair.
Hope for children with
spastic diplegia comes in the form of selective dorsal rhizotomy (SDR), an operation that up until recently was only available in the US. It works by electronically stimulating individual nerve fibres to work out which ones are causing spasticity of the muscles. The abnormal rootlets are then cut. The procedure is not without risk and it costs upwards of $125,000 once travelling and rehabilitation are factored in.
Family sacrifice
It was money Mark and Megan didn’t have. But the pair, who also have 15-month-old son James, were determined their precious daughter would have the chance to walk again.
The doting parents turned to the kindness of strangers, setting up a Givealittle page, and also accepted the support of their “wonderful” community and Jade’s school, Pukekohe Hill.
After six months of fundraising, including live
auctions and quiz nights, the family winged their way to Missouri in the US in March 2017 for the life-changing operation.
It was a tough time for Jade, who had to endure almost four hours of surgery, followed by a five-day stay in hospital. “It was really stressful,” Megan admits. “We also had James with us and he was only a baby at the time.”
The couple alternated spending nights in the hospital with Jade while the other stayed at the apartment with wee James.
“For three of those days, Jade had to lie flat on her back,” recalls Megan. “It was very hard for her, but she was strong and got through it. Before the surgery, we’d talked to her about what it would involve and we kind of just took it day by day, being there for her.”
The effects were soon obvious. Says the proud mum, “She took six steps postsurgery, which is something
we thought she’d never ever do.”
Still, the operation was only the beginning of a long journey for this giggly youngster, who now faces two years of gruelling follow-up treatment to help her learn to walk. It includes three intensive sessions of physiotherapy, plus an hour of Pilates each week, horse riding, adaptive football and swimming.
Thankfully, laughs Megan, Jade is a total water baby. “Freestyle and backstroke are something she will have to work hard on in the future, but in the meantime, she’s super-proud of her doggy paddle. She gets herself around the pool and takes a lot of pride in that.”
The Beatties hope telling their story will raise awareness of SDR for other families in similar situations. “It’s hard, but it really is worth it,” Megan urges. “If it wasn’t for this life-changing surgery, Jade would have been confined to a wheelchair for the rest of her life. Now we envision an independent and pain-free life for her.”