A desperate mum has issued an emotional plea to Sydneysiders, as the Covid-19 outbreak takes a huge toll on her sick child.
A Sydney family has made an impassioned plea for people to follow Covid-19 restrictions, not just for their own sake but for the lives of Australians like their seven-year-old daughter, Emily.
Claire and Ben Sayers’ little girl has Quadriplegic Dystonic Cerebral Palsy, a severe form of cerebral palsy that requires constant care and has had her spend more than half her life in hospital.
Even a common cold can put Emily’s life at serious risk and leave her struggling to breathe.
Covid restrictions meant only one parent was able to be at hospital with Emily when she was recently admitted with rhinovirus and enterovirus, despite the family carefully following stay-at-home orders to avoid viral infections.
The viruses, which her parents said were like a “normal cold-type virus for you and I”, made Emily seriously ill and required suctioning of her lungs to help her breathe.
Her parents took to Facebook recently to plead with people to stop putting lives like Emily’s at risk by flouting Covid rules.
“This is scary! This is a normal cold type virus for you and I and we ARE doing the right thing,” the family wrote.
“We still get viruses into our house! With online shopping and absolutely minimal contact. So for anyone flouting the rules (and) not adhering to the restrictions, you are basically putting my daughter’s life at risk.
“Stop it! From a family who have to endure putting tubes down their loved one on a regular basis, take one day in our reality and have a reality check (about) what you’re gambling of what you may have to go through.
“Of not being able to be with your loved ones and hoping with all your being that it won’t become permanent. This is real … life is precious and don’t take it for granted.”
Her parents are sharing Emily’s story to raise awareness for STEPtember, a virtual charity event next month that raises vital funds for people like Emily who live with cerebral palsy.
‘Like looking after five children in one’
One in every 700 children born in Australia has cerebral palsy, an umbrella term for a group of permanent physical disorders caused by brain injuries.
Emily had a birth injury called hypoxic ischaemic encephalopathy due to her enduring a period of time with no oxygen reaching her brain.
She was originally diagnosed with a mild case of cerebral palsy but is now considered severe.
“We really had no understanding about what cerebral palsy was, and what we had expected to be a completely normal experience, because had a very normal pregnancy, wasn’t,” Emily’s mum Claire Sayers said.
“I’m not going to say we didn’t struggle with certain things, but we’ve been very much in love with our kid since before she was born.”
Due to her brain injuries, Emily has vision impairment, limited speech and uncontrolled epilepsy. She is fed through a feeding tube inserted in her stomach and has battled a constant onslaught of gastric viruses.
She has spent more than half her life in hospital and undergone a series of surgeries on her stomach and hip reconstruction.
“Emily is like a newborn when it comes to care. She is like looking after five children in one,” Ms Sayers said.
As she faces struggles most kids her age don’t, “happy, funny” Emily loves movies and books and takes a variety of therapies through the Cerebral Palsy Alliance.
“Emily has got the best outlook on life,” Ms Sayers said.
“She goes through a lot, but she lives life better than most people I’ve ever met.”
Emily has also been treated with a form of stem cell treatment that uses umbilical cord blood to help repair the brain, but limited research options makes it difficult for families to access stem cell treatments.
“For Emily, our wish is quality of life. It always has been,” Ms Sayers said.
“We were very specific when we put Emily into stem cell (treatment) and we said to her, ‘If it doesn’t do anything for you, it’s because you can’t improve on perfect’. I never want the kid who thinks she needs to be fixed. Because she doesn’t. She’s gorgeous the way she is.
“But medically, if I could take some of the burden off seizures, digestive pain, all that stuff and allow the Emily we see in her best moments to be more permanent, then that is what I would go for.”
STEPtember, which starts next month, is a virtual challenge that calls on Australians to take 10,000 steps a day for 30 days to raise a target of $11 million to improve the lives of the 40,000 people in Australia with cerebral palsy.
“STEPtember promotes individual health and wellness, while uniting participants in a common goal – to help people with cerebral palsy live their best lives,” Cerebral Palsy Alliance’s General Manager of Fundraising Lucy Jacka said.
“As a virtual fundraising event, people from right across Australia can step up to the challenge and reach their daily target at their own pace, in their own way.”
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