Little Lyla is all things a six month baby girl should be – gorgeous, smiley and smitten with her Mummy.
But her delightful nature hides a terminal medical condition that will one day take her life.
Lyla was born at Nambour Hospital in July, 2015 to Bec and Kieran Van Jole from Meridan Plains.
The first sign of any medical issues was a failed hearing test at birth.
She then failed four consecutive hearing tests and was diagnosed with moderately severe hearing loss.
“We were obviously upset with the diagnosis but soon after we had her fitted with hearing aids and we felt things were looking up for her,” Lyla’s mum Bec said.
But it was during one hearing test that the physician expressed concern over the feel of Lyla’s abdomen with a potential enlarged liver and referred her on for further testing.
Within weeks little Lyla was diagnosed as having a rare genetic disorder that attacks internal organs.
Peroxisomal Disorder is a disease where the body can’t process fats and proteins properly, which then overloads internal organs causing them to struggle to function and eventually fail.
“The diagnosis was extremely difficult to comprehend, and it also came at the same time Lyla was admitted to hospital for a virus where another issue requiring surgery was also picked up,” Bec said.
“This was an incredibly hard time for our family, as we also have two older daughters who were struggling to understand everything – as were Keiron and I,” she said.
Lyla’s condition also attacks her immune system, so what is the common cold for many young children can turn in to a hospital stay for her.
“Lyla and I saw 2016 in from an isolated room on the paediatric ward at Nambour Hospital,” Bec said.
“We spent five nights on the ward as Lyla struggled with bronchiolitis and while it was incredibly scary at the time, I can’t speak highly enough of how amazing the nursing staff were,” she said.
“At one point I hadn’t slept for nearly 3 days for fear of Lyla stopping breathing and I had a nurse come and sit to hold Lyla’s hand so I could sleep – I’ll never forget that.”
Lyla’s future is an uncertain one, but her parents hold firm to the hope their baby daughter will fight the odds against her.
“We’ve been told that for most little one’s born with this disorder the average life span is 3 years old,” Bec said.
“But through an international support group I’ve found some parents with children who have lived in to their 20’s so we just don’t know – all we can do is love her and provide for her.”
Bec and Kieran will join local parents Ryan and Emme Kirkham for a special Valentine’s Day lunch at The House The Coast Built this Thursday.
Ryan is the owner of Bakers Delight at Kawana and Maroochydore and came on board as a sponsor for The House The Coast Built for the second time in 2015.
“Our son Benjamin was born at Nambour Hospital in 2011 and was diagnosed with Downs Syndrome soon after,” he said.
“We’ve had a lot to do with the local Hospital and Health Service since then and we’re indebted to the level of care provided to us, so it was an easy decision to provide ongoing support to Wishlist for this project.”
Alfie’s Moo Char Bar at Caloundra has generously donated two fine dining platters for the occasion.
Dave Austin from Format Kitchens – who donated more than $10,000 in resources and time to install the kitchen at The House The Coast Built – will also be part of the luncheon.
“When Ausmar Homes approached us to be part of The House The Coast Built in 2015 I was more than happy to offer our services 100% free of charge,” Dave said.
“This is the second time we’ve been involved with a Wishlist House and I’m thrilled that this year all proceeds are going towards kids on the Coast,” he said.
“Our suppliers assisted hugely with this contribution, the likes of Laminex, Signature Stone QLD, Hettich, Carter Holt Harvey and Surteco, and that allowed us to add a few luxury upgrades to the kitchen that I hope will really help come Auction day.”
Rebecca Hines from The Good Guys Kawana Waters will also join the lunch, in acknowledgement of the company’s significant contribution to the House, including a fridge, washer, dryer, microwave, three LCD televisions, a sound bar, kettle, toaster, blender, Soda Stream machine, coffee machine and bread maker.
“The House the Coast Built is such a fantastic local initiative and provides important funds to many deserving families on the Sunshine Coast,” Ms Hines said.
“The Good Guys Kawana Waters is proud to support Wishlist and we hope people dig deep on auction day to allow the organisation to continue its great legacy.”
Wishlist CEO Lisa Rowe said families attending the lunch bring home just what the sale of The House The Coast Built and its contents is all about.
“The kitchen is really the heart of the home, so it’s a privilege to have these remarkable families come and essentially christen it with us and fill it with love and goodwill ahead of the Valentine’s Day Auction on Sunday,” Ms Rowe said.
“We’ve said it many times before, but there is so much generosity and soul inside the four walls of this home, and we hope that whoever has the final bid on Sunday feels all of that and knows they’ve been a part of something seriously special,” she said.