A one-year-old left disabled after battling meningitis four times desperately needs £30,000 for surgery that could help him walk.
Luca Johnson’s family were warned he and his twin Lola had slim odds of survival after he was born three months prematurely. After defying medical expectations to survive, Luca went on to catch meningitis four times.
Although Luca survived, his parents soon noticed he was unable to lift his head, grab toys or crawl – all things Lola could do.
His battles with the killer infection left him with cerebral palsy and the brain injury periventricular leukomalacia, which affects movement.
Luca’s parents, Jodie Johnson, 30, and her husband Matthew, 29, were warned he may never walk or talk – but refused to give up on him and are now trying to raise tens of thousands of pounds to pay for him to have selective dorsal rhizotomy (SDR).
SDR improves muscle stiffness in cerebral-palsy patients, which the couple hope will enable Luca to walk before he starts school in 2022.
However, the operation is not available on the NHS for such severe cases, meaning the family, from Leigh, Greater Manchester, will have to raise money to go private.
One-year-old Luca Johnson (pictured left with his mother Jodie) has been left disabled after battling meningitis four times. The youngster (pictured right as a newborn) needed oxygen and spent weeks in hospital after being born three months premature on September 24 2017
Luca’s mother and father Matthew – who are also parents to Nova, two, and Luca’s twin Lola (all pictured) – believe their son’s only hope of walking is for him to have surgery not available on the NHS. Luca has cerebral palsy and the procedure will help reduce the spasticity in his legs
Mrs Johnson, who is also mother to two-year-old Nova, said: ‘We are hoping Luca will be able to walk before he starts school.
‘It is upsetting to think he can’t have the operation through the NHS because his condition is more severe, while children of a lower grade are able to.
‘Our dream is one day he will be able to run around with his siblings.
‘We feel Luca has been deprived of his life so far so this [operation] gives us so much hope for a brighter future for our precious boy.’
Luca and Lola arrived following a ‘spontaneous premature birth’, which Mrs Johnson puts down to stress.
‘I was already 9am dilated by the time I reached the hospital,’ she said.
‘The doctors were checking the babies’ with an ultrasound and said their heartbeats were dropping so they needed to get them out straight away.’
The twins were transferred to Wigan and Leigh Hospital shortly after they were born via an emergency C-section at the Royal Bolton Hospital in September 2017.
Mrs Johnson, who is Luca’s full-time carer, said: ‘After the twins were born doctors told us the next 24 hours would be crucial but they did so well in the first six weeks and we were able to hold them for the first time at just two weeks old.’
Things then took a turn for the worse when Luca battled sepsis at just six weeks old.
This occurred after part of his bowel became inflamed and died in a condition known as necrotising enterocolitis.
After a tough start, Luca was due to come home in December 2017.
However, this was delayed when he was struck down with bacterial meningitis and a second bout of sepsis.
While he recovered from that episode, Luca went onto to contract meningitis in February, May and June last year.
Although all were traumatic, it was the episode in May that left a lasting impact, with an MRI and CT scan revealing Luca had damage on both sides of his brain.
‘Each time he contracted meningitis again, we knew there was a risk he could suffer brain damage,’ Mrs Johnson said.
‘Every time he seemed to be okay but doctors did tell us it is often hard to tell how the infection has affected them long term.
‘During the third time, the doctors told us to prepare for the worst. All I could do was cry, it was all up to him as to whether he would pull through.’
Doctors have warned Luca’s parents his injuries are so severe he may never walk or talk. The youngster (pictured left recently and right as a newborn) battled sepsis when he was six weeks old. He was then struck by his first bout of meningitis days before he was due to go home
His parents want Luca to have the surgery when he turns three to give him hope of walking before he starts school in 2022. Their ‘dream’ is he will one day ‘run around with his siblings’
Although Luca survived, his parents soon noticed he was unable to lift his head, grab toys or crawl – all things Lola could do.
‘If he was lying down on the play mat he wouldn’t reach out with his hands, he was trying to reach them with his tongue – it was like his brain wasn’t telling his muscles what to do,’ Mr Johnson said.
‘We started to do a lot of research ourselves, we drove ourselves crazy.
‘It was more not knowing what was wrong, I felt so depressed at the time and I would cry for him, it was awful.’
In October last year, the youngster was finally diagnosed with quadriplegic cerebral palsy and PVL.
Meningitis can cause cerebral palsy due to the damage the infection does to a baby’s brain.
And PVL occurs when the white matter in the brain is deprived of blood and oxygen, which causes it to ‘soften’. This can lead to problems with movement due to white matter being responsible for the transmission of messages from nerve cells.
Despite Luca’s difficulties, he has fitted in well with family life.
‘Nova and Lola have such a good understanding of his condition already, they seem to be aware of his struggles,’ Mrs Johnson said.
‘Nova will give him a biscuit and wait for him to grab it because she knows it takes him a bit longer and Lola gives him lots of hugs and kisses.’
Doctors were unable to tell the extent of Luca’s brain damage initially. However, his parents knew something was wrong when he became unable to reach out for toys
Pictured left in hospital, it was the third bout of meningitis that caused lasting damage on both sides of Luca’s brain. His parents say the youngster (right) deserves a ‘bright future’
Nova and Lola are ‘aware of Luca’s struggles’ and ‘give him lots of hugs and kisses’
Luca, who cannot stand, walk, talk or sit unaided, will undergo Botox injections in September to relax the muscles in his legs. This is recommended before patients have SDR.
However, his parents believe the only way he will ever walk is if he has the surgery when he turns three.
SDR involves subdividing nerve roots in the spine that cause spasticity.
According to Great Ormond Street hospital, children whose muscle stiffness is related to them being premature tend to respond well to SDR, however, those with a history of meningitis do not.
NHS England’s clinical commissioning policy states SDR can be considered in children with cerebral palsy who have ‘spasticity mainly affecting their legs and with not much weakness and with no “dystonia” and who can walk but have problems with their pattern’.
Alder Hey Children’s Hospital in Liverpool offers the surgery for free for children of grade II or III spasticity.
But for those of grade IV or V – like Luca – there is a £16,000 cost.
Luca’s parents are therefore fundraising £30,000 to pay for the operation, as well as ‘intensive physiotherapy’.
Donate here.
Mrs Johnson (pictured left with the twins as newborns) gave birth via emergency C-section and was warned the first 24 hours would be critical. Despite everything he has endured, Luca (right) still manages to raise a smile. His parents claim the operation would give them ‘hope’
