$120k cerebral palsy surgery 'worth it' to give Hugo a shot at a normal life
Wellington boy Hugo Simmons has a shot at living a normal, pain-free life but it comes with a hefty price tag – $120,000 to be exact.
Hugo, 3, has spastic quadriplegia, a type of cerebral palsy which means both his arms and legs are very tight, making walking and other simple tasks difficult and painful.
Currently, he gets around in a wheelchair with help from his mum, Kerry Simmons, but that could all change thanks to a life-changing surgery in the United States.
"If he has the surgery, it should help him function in a more natural normal way, giving hope that he will eventually walk instead of being confined to a wheelchair," Simmons said.
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The spinal surgery, known as Selective Dorsal Rhizotomy (SDR), is currently unavailable in New Zealand but has been performed at St Louis Children's Hospital in Missouri for several years.
The procedure, pioneered by Dr Tae Sung Park, involves cutting some of the sensory nerve fibres that come from the muscles and enter the spinal cord.
While it's a fairly invasive procedure, out of the more than 3000 operations performed at the hospital, only four patients had suffered mild complications.
Hugo is on the waiting list to have the surgery in October.
"I feel pretty confident, said Simmons. "He's been for an assessment through the doctors in the US and we're happy with their analysis and the potential for a better quality of life."
"So it's not that it can't be done, it's just about how we can get it done."
The ideal recommended age for the surgery is between three and four years old, putting time pressure on the family to get the money together as fast as possible, through grants and crowd funding.
Simmons said she had reservations about setting up a give-a-little page and sharing her son's story with the world.
"This is really out of my comfort zone ... Even just setting up a Facebook page for Hugo was a bit daunting."
"That's the harsh reality, I never asked for this but I can do something about it, make a change to one person and educate a community at the same time."
More than 7000 people have cerebral palsy in New Zealand with a third of all suffers under the age of 21, however without dedicated specialists, treatment options are limited.
"Our medical team definitely try their best and they know what they know but this centre [in the US] only deals with kids with cerebral palsy, that's all they look at.
"Sometimes I struggle with the answers I get here because actually there's a lot of options out there."
Simmons was also exploring various grant providers to help pay for the surgery which had, so far, proved difficult.
"That problem that we're having with them is that he doesn't meet specific criteria, so he's too little, too young in age – those kinds of things."
She remained hopeful enough money would be secured in time for the tentative surgery date, making for a good end to a busy year for the family.