Mum's fight to give poorly Luca a better life

A battling mum is trying to raise £30,000 so that her baby son can undergo life-changing surgery.

Friday, 22nd March 2019, 12:35 pm
Updated Friday, 22nd March 2019, 1:38 pm
Little Luca

Luca Johnson was born prematurely, and was very poorly in his first 10 months of life, suffering from NEC, sepsis and meningitis.

The Leigh 18-month-old has brain damage and cerebral palsy, meaning he is unable to walk, talk, stand or sit unaided.

His 30-year-old mother Jodie is hoping to raise through crowd-funding £16,000 for SDR (selective dorsal rhizotomy) surgery to help with Luca’s muscle spasticity, which is not yet fully available on the NHS and an additional £14,000 will go towards physiotherapy for Luca pre and post-surgery, which is also not fully available on the NHS.

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Luca with his family

Jodie said: “My little hero has overcome so much in his short life. His first 18 months should have been filled with smiles and happiness, but instead he was battling deadly diseases that have left him with a lifetime of complications.

“Things that come easy to other babies are very difficult for Luca, but he’s a warrior who brings us so much joy every day. We want to give him the absolute best chance in life, and that’s why we’re raising money for the surgery and care that could change his life.”

Despite growing up in a loving family and being a happy, jolly baby, Luca’s first 18 months were plagued by suffering. He had meningitis four times, sepsis twice, and also suffered from NEC – a serious illness in which the tissues in the intestine become inflamed and begin to die.

Jodie said: “When he had his third episode of meningitis, I knew something else was wrong. At the time, I was just worried about him becoming ill again, but I noticed that he was lagging behind his twin sister Lola in development.

“He couldn’t grasp onto things, and his hands were balled into fists. His body and limbs were stiff, and he was trying to reach his toys with his tongue instead.

“After we started noticing changes in his development, I started feeling depressed.

“When we got the diagnosis of cerebral palsy in November last year, the first few days were horrific. You read all sorts of horror stories online, and you can’t help but worry about your child. But instead of being negative, which doesn’t change anything, I decided to raise awareness of Luca’s journey, helping others who are in similar situations.”

Jodie set up an Instagram page where more than 4,000 people show their support for Luca and share their stories.

“A diagnosis is just a label,” Jodie said. “People can see how well Luca is doing despite everything he’s been through. It doesn’t change who Luca is.

Luckily, I have a very supportive family. They look after Lola and Luca’s two-year-old brother Nova when we have to go to Luca’s medical appointments up to five times a week.

“We do physiotherapy with Luca every day.”

Jodie is aiming for Luca to have the SDR surgery, with money raised through crowdfunding, when he turns three to reduce the stiffness in his legs. The operation corrects muscle spasticity in children with cerebral palsy.

To support the appeal click: here