Brave miracle boy, 4, fighting condition which leaves him in agony when it’s cold
A brave four-year-old boy with a rare condition that leaves him “crying in pain” when it gets cold is desperate to play football with his friends.
Little Dominic Wade, from Salford, spent months in intensive care after being born prematurely at just 27 weeks – and now his family is trying to raise £35,000 for life-changing surgery.
The youngster, born at the Royal Bolton Hospital, is unable to breathe on his own.
He caught a bowel infection that restricted his ability to breathe even further, Manchester Evening News reports.
But Dominic battled on, and after three-and-a-half months in an intensive care unit at North Manchester General Hospital, he was able
to go home with the help of oxygen support.
Mum Gilvana Rado and dad Karl Wade were ‘on cloud nine’ at the prospect of finally having their baby boy home and seeing Dominic progress.
After three months with his loving parents, Dominic no longer needed oxygen, was gaining weight, and looked ‘alert and happy’, they say.
But when Dominic never reached his rolling and crawling milestones his parents knew something wasn’t wrong.
Gilvana and Karl’s worst fears were confirmed when they took their son to see doctors, who told them that their son had suffered oxygen deprivation after birth and sustained a hypoxic brain injury.
Dominic was diagnosed with cerebral palsy that day.
Since then he has lived courageously with the condition, ‘never letting it define him’, says his mum.
But as a result of the abnormal communication between his brain and his nerves – known as ‘spasticity’ – Dominic suffers intense pain.
“He had a lot of tightness, cramps and pains in both legs – his bones grow but the muscles don’t work the way they should,” mum Gilvana said.
“At the moment, the cramps in his muscles are making things really hard.
“It’s worse when the weather is cold, he’s often crying in pain.
“It’s heart-breaking to see him suffering.
“He can speak, he goes to mainstream school and he is fully cognitive – he is on the same level as all the other children. It’s just his legs.
“He once asked a doctor, ‘can you please fix my legs? I just want to play football’. He wants to be like the other children.”
Dominic’s parents are hoping that selective dorsal rhizotomy surgery at Liverpool’s Alder Hey Hospital, known as SDR, will help heal some
of Dominic’s pain.
SDR is not a cure for cerebral palsy but intends to improve quality of life and or mobility in children affected by it, the NHS says.
The potential benefits of SDR include reduction of spasticity and painful spasms, as well as improvements to ease of care, mobility, getting dressed, sleep, physical endurance and energy levels.
The surgery for children like Dominic, however, comes at a hefty cost.
The NHS funds SDR surgery for children categorised as Grades II and III on the Gross Motor Function Classification System. Dominic is a Grade IV.
This means that if Dominic wants to have the surgery, the family must find £16,000, according to material on the Alder Hey Hospital website.
And that huge sum comes before any postoperative therapy costs, which his family say come at an extra cost.
“It’s been very stressful and financially it can get quite difficult, everything Dominic needs we have had to pay for as the NHS only funds basic equipment,” the mum said.
“He needs more specific care than that. When he was two-and-a-half, we had to fundraise to help him see a therapist.
“We had an appointment at Alder Hey Children’s Hospital and we were hoping for Dominic to be classified as a Grade III so he would have
more chance of getting the surgery. But sadly, Dominic isn’t weight-bearing so he was put into Grade IV.
“But the results for children at Grade IV are so amazing. They manage to get down to Grade III. It will make Dominic much more comfortable.
“We’re trying to raise £35,000 for the surgery and 12 to 18 months of post-op therapy.
“He is just a child and we just want to give him the best we can afford.
“We both work and it’s hard to ask – especially as we’ve done this before.
“We wish we could do this from our own pockets but, unfortunately, we don’t have that kind of money.”