I almost lost my son to meningococcal: Seven years on he’s still suffering health issues from the disease – here’s what I want all parents to know

A mother who nearly lost her son to meningococcal disease has shared how the disease still affects his life seven years later, and how she regrets not checking to see if his fingers and toes were cold from blood loss.

Stephanie Ryder said Chevy woke up normally one morning in 2016, but soon lost all of his energy and then refused to eat or drink.

Within hours, the mother-of-three from Perth discovered a rash and rushed the then three-and-a-half-year-old to the emergency department, where doctors immediately suspected him and began treating him for invasive meningococcal disease (IMD).

Chevy’s condition rapidly deteriorated to the point where his blood stopped circulating to his extremities, his oxygen levels were dangerously low, and his organs began to fail.

He was put into a medically induced coma, had to drop several fingers and toes and amputate his entire right foot, and spent five months in the hospital recovering.

When he was three years old, Chevy woke up feeling unwell. By evening his organs began to fail and he was put into an artificial coma.

Stephanie said she was a “mess” throughout the whole ordeal and struggled with the possibility that she could lose her son, leaving the details of the early events hazy in her memory.

She wants parents to educate themselves about the signs and symptoms of IMD and listen to yourself if you think something is wrong.

Chevy’s early signs were similar to normal viruses, but Stephanie now wishes she’d checked to see if his fingers and toes were cold from blood loss.

“It’s hard, especially when a doctor tells you it’s just one thing and there are so many different flus and viruses out there,” Stephanie said.

“Believe in yourself and if you think something isn’t right, even if you’ve already been to the doctor, go to the hospital anyway.”

“When he woke up he was his usual crazy self and when it was between eight and nine in the morning he was really lethargic,” Stephanie told FEMAIL as she explained how the ordeal began.

“He just lay on the couch and wouldn’t move, he just wanted to cuddle and that’s where it started.”

As the day progressed, Chevy stopped eating and drinking, vomited a few times, and his temperature started to rise, so Stephanie gave him Panadol and Nurofen.

The 35-year-old called a family doctor who came to the house and said Chevy most likely had a stomach flu and advised Stephanie to keep a close eye on him.

“It got to about 7:30 p.m. and I kept an eye on him the whole time. He was in bed and when he turned over the covers came off a little bit and I saw some rashes, they were really little purple spots,” Stephanie said.

The rash was the last straw that caused Stephanie to rush Chevy to the hospital, knowing it could be a sign that something serious was going on.

Stephanie was by Chevy’s side when the doctors came to check on his progress, check the Legion on his brain, and see if his circulation would return to his hands and feet.

“The only reason I got an education is because my mom lost a friend to meningococcal disease as a teen, so she kind of drilled it into my head,” Stephanie said.

By the time Chevy got to the doctors, he was so weak and lethargic that he wouldn’t talk and his rash had spread “quite a bit” all over his body.

Thinking back to the first night in the hospital, Stephanie’s memory is a blur of doctors and nurses, tests and worrying statistics.

Doctors quickly began treating the boy for IMD before tests confirmed.

Chevy’s oxygen level was very low and his blood was leaving his limbs and digits to try to save his failing organs.

“(Doctors) gave me his survival rate and asked about antibiotics. They gave us the impression that he wouldn’t make it,” Stephanie said.

“I couldn’t handle it at all. I panicked and felt physically ill. We actually thought he was going to die.’

Once he was stable, Chevy was transferred to Perth Children’s Hospital and put into an induced coma due to a swelling in his brain and to help his body fight off the infection.

Stephanie was by Chevy’s side when the doctors came to check on his progress, check the legion on his brain, and see if his circulation would return to his hands and feet.

On day three, they began to see improvements that gave the parents hope.

“It was very up and down even when he was in a coma, they were running tests and he was even on dialysis because his kidneys weren’t working,” Stephanie said.

“They didn’t know brainwise how he was going to get out.”

When Chevy awoke from the coma over a week later, he was surprisingly in good spirits.

“He was completely himself and that was one of the things that was the biggest relief. He talked and was his normal self,” Stephanie said.

However, Chevy still had a long road ahead of him in the hospital.

Ten days after being put into a coma, Chevy woke up and was “back to his normal self” but had to spend five months in the hospital recovering (pictured with his father and older brother)

As the tissue began to die and would not recover, Chevy had the top half of his fingers on his left hand, some toes on his left foot, and his entire right foot amputated.

His rash had turned into burning blisters that required daily care and treatment, and he had to learn how to strengthen his muscles after spending so long in his hospital bed.

Chevy was able to battle the terrifying disease and get stronger and stronger, eventually leaving the hospital in January, five whole months after that first night in the ER.

Now ten years old, Chevy is still suffering the ill effects of the potentially deadly disease he contracted as a toddler.

An “incidental” brain injury that doctors suspected was swollen by the disease has caused hearing loss, while the growth plates in some of Chevy’s bones were damaged.

This means that some of his bones, such as those in his left forearm, will not grow with the rest of his body and he will need bone-lengthening surgery.

Chevy already had his first procedure last year, which was painful and traumatic for the pre-teen.

“His hearing we only found out about a year ago and even the bone thing was only a year or two ago. There’s something new added every year,” Stephanie said.

Chevy also worries about illnesses and the meningococcus has affected his self-confidence.

‘He doesn’t like to talk about it. I think it’s because he doesn’t want to think about it. It’s simple things, like he used to love to ride a bike when he was younger, but now he thinks he can’t,” Stephanie said.

“He said to me the other day something like, ‘Meningococci have taken my talent away’. We’re just trying to encourage him.’

While it will be a guessing game as to how Chevy will continue to develop, the family remains confident that he can regain his confidence and live a happy and healthy life.

While it will be a guessing game as to how Chevy will continue to develop, the family remains confident that he can regain his confidence and live a happy and healthy life (pictured with his younger sister).

Another unknown is where Chevy contracted the disease, which can be asymptomatic in some people.

“They say people carry it in the back of their nose and throat and he did go to daycare, but there are hundreds of children there. I don’t think we’ll ever know,” Stephanie said.

‘I think that’s the worst; that it is unpredictable and that every child will get different results from it.’