When Lyla Riley was born she had high levels of jaundice and doctors were worried about her liver, forcing her to spend time in the Neonatal Intensive Care Unit or signup to continue reading The tough little girl pulled through and started hitting all the milestones your average child should hit. This all changed on New Year's Day of 2021. Emily and Nicholas Riley had to take their little girl to the emergency department in Dubbo when she started having seizures.
"They basically said, 'look it's probably a virus' and sent us home with some neurofen and hydralyte ice blocks," Ms Riley said. The decline from there was quite fast. Lyla went from being a little girl who could speak three to four-word sentences and was toilet trained, to going mute and back into nappies.
"She turned into like a little zombie kid, the seizures continued and on one occasion we ended up in the emergency department of John Hunter Hospital," she said. While at the , it was recommended that Lyla undergo an electroencephalogram (EEG) - a test that measures electrical activity in the brain. The EEG test seemed fine and doctors said they weren't concerned.
"We saw the paediatricians and expressed our concerns about her whole persona in general, and the fact she wasn't talking anymore, wasn't going to the toilet and her social interaction declined so much," she said. The parents kept getting told their daughter was fine and there was nothing to worry about. In July 2023 Lyla ended up in the resuscitation bay, being resuscitated.
"They had to sedate her and even while sedated she continued to have seizure activity on the brain for about four to five hours," she said. It was after that, that the hospital kind of went 'oh okay, maybe there is something wrong'. The doctors found that Lyla had extreme sleep apnea, enlarged tonsils and adenoids and damaged eardrums.
"The doctors put Lyla on anti-seizure medication and we ended up getting surgery done for her adenoids, tonsils and had her ears cleaned out and looked at," she said. After that, the parents saw their daughter improve slightly. "When she woke up from that you could see that she was noticing things and she could hear, you could see the medication did help her," she said.
But it still wasn't improving at the rate it should have. "She still wasn't talking how she should really at all, still not toileting and still in pull ups," Ms Riley said. "She would get really, really worked up, where people would almost think she was throwing a tantrum, but she just couldn't communicate.
" Lyla started seeing an occupational therapist and physio which according to her mum has helped a lot. "We couldn't get an OT in Dubbo because it's hard to find good services out here, but luckily this year an OT from Sydney has come out and we've been on-boarded by her which is great," she said. It wasn't until March 2024 that Lyla had another seizure episode that was ignored by a paediatrician.
"We took it upon ourselves to try and find somebody and we ended up finding a neurologist in Sydney who we contacted and said 'we are desperate to find some help, there's something going on here'," Ms Riley said. They were finally able to see the neurologist and have tests done. After an overnight brain scan, the neurologist found the cause of all Lyla's problems.
"They found that diagnosis of the chromosome eight deletion, which is extremely rare, there are only 550 cases in the world," Ms Riley said. The chromosome eight deletion affects Lyla's intellectual speech, her muscles and joints and puts her at a heightened risk of cancer and heart disease. "We are now faced with back-and-forth visits to Sydney for not only neurologist appointments but cardiologist and oncologist appointments," she said.
"We have to keep on top of everything and try and make sure we don't run into those other things as well. "She'll probably have ongoing therapy forever, and part of this condition also affects her teeth and bones so now we'll have more dental visits." While this brings more challenges, Ms Riley said it was a "relief" to finally have an answer.
It feels really validating for us that we pushed and pushed for the right reasons. "It's also scary that there's nothing we can do about it and we don't know what the future is for her, it's a lot really." Ms Riley said the future feels uncertain because there are a million more appointments to attend.
Ms Riley's sister to help raise funds for all the appointments, accommodation and medical bills. We are quite proud people and we ended up selling one of our cars just to try and make sure Lyla has everything she can. Luckily both Ms and Mr Riley have supportive workplaces who understand when the couple has to take time off, or work from home.
"Each of our appointments cost anywhere between $400 and $500 and on top of that we have to drive down to Sydney, pay for accommodation and take time off work, and there's only so much leave that you can take before you have to take leave without pay," she said. "It has been a strain financially, especially with the cost of living crisis." Ms Riley said she wanted to thank everyone who supported her family during this tough time and anyone who had donated or shared her page because it has made a world of difference.
"Anything we get is going towards Lyla and whatever we can give her to make her life absolutely easier," she said. . Hi! I'm Ciara and I've been working as a journalist for a number of years now, covering everything ranging from council, human interest stories, community news and sport.
Got a story? Email me at [email protected].
au Hi! I'm Ciara and I've been working as a journalist for a number of years now, covering everything ranging from council, human interest stories, community news and sport. Got a story? Email me at ciara.bastow@austcommunitymedia.
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