Tot who fought deadly disease four times is left with lifelong side effects

A borough mum is highlighting the bravery of meningitis survivors after her son contracted the disease four times, leaving him with brain damage.

Friday, 3rd May 2019, 11:41 am
Updated Friday, 3rd May 2019, 11:51 am
Luca with mum Jodie

Jodie Johnson from Leigh, is raising awareness of the illness in a bid to give hope to others who have been permanently affected by it.

The mum-of-three gave birth to twins Lola and Luca in September 2017 three months early. Just 11 weeks later Luca was diagnosed with the potentially fatal infection.

After battling the disease four times, as well as sepsis twice, the tot has been left with brain damage which affects his muscle function, leaving him unable to walk or talk.

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Luca with mum Jodie

The family was later left reeling when immunology tests revealed that Luca’s vaccination had not worked and he had never been protected against bacterial meningitis.

“Luca has had the most horrific journey,” said Jodie, 30. “He was in hospital the first time he got it so they got him on treatment very quickly.

“He had all the signs of it, his heart was racing, he was vomiting and had a high temperature. He needed oxygen too.

“Luckily he started to recover quickly. He had an MRI scan which came back completely fine.

Luca with big brother Nova (right) and twin sister Lola (left) and mum Jodie

“When the scan came back clear we thought we were lucky, but little did we know what this horrible disease had in store for my precious little boy.”

Just weeks later, when the twins were five months old, Luca fell ill again.

Suspecting the worst, Jodie immediately rushed him to the hospital where he was once again diagnosed with the deadly disease.

“They didn’t take any chances,” she added. “They know that it spreads so quickly.”

The medical team once again were able to stabilise Luca and treat the disease.

But just two months later while Jodie, her husband Matthew and the three children were on holiday in Portugal, Luca, then only seven months old, fell seriously ill again.

“This time I knew the disease nearly won”, Jodie said. “Luca was deteriorating very fast, he was so lethargic, with a temperature of 40.

“We were flying home the morning after he fell ill.

“We thought there was no way that he could catch it three times but he looked lifeless and lethargic and needed help with breathing.”

When the family arrived in Newcastle, Luca’s temperature soared to 40 degrees.

He was rushed to hospital where Jodie and her husband Matthew demanded blood tests to be done, suspecting he had contracted the disease again. Jodie said: “They had to water down his lumbar puncture because his spinal fluid was so thick with infection.

“We knew it was a severe case, they told us to prepare for the worst.”

The youngster was out of the woods within a week, but it was then that his parents started to notice a difference in his behaviour.

“His hands were in fists, he wasn’t able to grasp things and he couldn’t roll or sit, all things Lola could do,” added the brave mum.

“He’s 19 months old now and there is a lot he can’t do.

“He faces long-term complications and he’s still yet to sit fully unaided, stand, walk or talk – all things we’ve been told he may never do.”

“But he is the happiest child and he has so much potential.

“No matter what life has thrown at him he just takes everything in his stride and always with a big smile.

“He’s so determined and I know he’s destined to do great things.

“He knows what he is doing it’s just his body letting him down.”

The couple, terrified for their son’s safety, took Luca for an immunology test which revealed that his post-natal vaccination had not worked and he had no immunity to the disease.

Despite then catching viral meninigitis, which is a less serious strain of the illness, Luca has since been vaccinated.

Jodie, who is a supporter of the “Meningitis Now” charity and who has recently jumped 15,000 feet from a plane for the Meningitis Foundation, said that there is a light at the end of the tunnel for the family.

Luca, who was left with cerebral palsy, could one day benefit from SDR surgery, which treats muscle spasticity caused by abnormal communication among the brain, spinal cord, nerves and muscles.

Despite the severity of the effects, Luca is not eligible for the treatment under the NHS just yet.

“There are grades for cerebral palsy,” she said.

“If you are grade two or three you can walk with a walking frame or you can stand unaided for a good few seconds.

“Luca is grade four, which is a bit more serious,

“Grade two and three are funded for treatment by the NHS but grade four is not.

“Lucas legs are extremely stiff which is why this SDR surgery is a must. We are aiming for him to hopefully have the surgery when he turns three.”

But the family is working hard to raise the £30,000 to pay for the procedure and the physiotherapy which would follow.

Jodie and Matthew, who also have a two and a half year old son Nova, are hoping that the procedure could improve Luca’s prospects for the future.

“I want to raise awareness of meningitis but also the disabilities caused by it,” she said.

“Life doesn’t stop just because there is a diagnosis.

“You can go on and live a full life.”

Jodie has already launched a page for Luca, which documents his journey so that other families of meningitis sufferers can have hope.

The site, which has over 5,000 has followed the youngster’s progress through pictures and videos.

There is also a JustGiving page where donations can be made to help pay for Luca’s treatment.

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