Louie George Wood was born prematurely at 28 weeks, weighing less than 2lbs, and then suffered a bleed on the brain, chronic lung disease, suspected sepsis, anaemia and stomach issues.
The five-year-old has quadriplegic spastic cerebral palsy, periventricular leukomalacia a type of brain injury in which cysts form on the brain and global developmental delay.
This week the family reached the £120,000 goal they need for Louie’s vital surgery to allow him to walk and make home adaptations.
His mum, 35-year-old Jodie Morgan, told the Chronicle the family were humbled by the support of local residents who have supported them on their journey for the last three years.
She said: “When we hit the target we were absolutely speechless - it’s just amazing and overwhelming.
“We’ve got so many words that we want to say but we just don’t know exactly where to start thanking people yet.
“It’s extremely overwhelming but we’re so thankful for everyone’s support.
“It’s been three years of fundraising and we didn’t think we’d ever manage to raise that much because it was such a daunting amount.
“One of the most amazing things is that we’ve raised more money during the last 18 months than we had pre-Covid.
“You’d expect the opposite and we thought that fundraising would collapse but it’s definitely not done that.”
Louie started education at Paces School, in High Green, last month - a ‘huge step’ for the youngster.
Jodie said that he’s been enjoying his time there and has settled in ‘really well’ - a big relief for the family.
“Louie’s absolutely loving school at the minute - he’s settled straight in and it’s such a relief,” she added.
“He’s changed so much since we started fundraising three years ago.
“He’s carried on proving his prognosis wrong - everything was so bleak at the beginning but he’s doing more and more of what they said he’d never be able to do.
“We’ve put everything we have into him and worked ourselves to the ground.
“That and the fact he’s such a determined little boy is the reason he’s doing so well.”
The family were originally aiming to raise £120,000 which would help pay for adaptations to the home, as well as the SDR (selective dorsal rhizotomy) surgery - which aims to reduce spasticity in the lower limbs.
Louie didn’t fit the criteria for the NHS to undertake the surgery and so he will have to head to America to have the surgery - but this is something that will have to be put on hold for the near future.
“Our main priority has always been getting Louie the surgery which would take the bulk of the fundraising up,” she added.
“But there’s other costs like the splints and his physio and that costs £4,500 every month.
“When we started to fundraise £120,000 would have been enough but it’s not as straight forward to make the house adaptations - we’re going to need to carry on fundraising which is a hard pill to swallow.
“When we first started on this journey I wasn’t ill either and now I feel guilty because we’re having to put my surgery first.
“I have stage four kidney failure and it’s life or death unfortunately.
“That’s why we’re having to wait until at least next summer when I can get a kidney and pancreas transplant but it’s awful that I’m having to come first.”