When Ethan Jones arrived in this world, nearly three months earlier than he should have and weighing only 1.4kg, his family had no idea what lay ahead for him.
Daily physiotherapy, hydrotherapy, speech therapy, conductive education and regular Botox injections in his legs to reduce stiffness are the reality for the now four-year-old.
Ethan has cerebral palsy (CP) and in a few short months will fly to St Louis Children’s Hospital in America for life changing surgery.
At the moment, the youngster cannot walk or stand and struggles to sit independently.
Ethan’s journey began when at four weeks old he was diagnosed with periventricular leukomalacia, which is a form of brain injury common with premature and very low birth-weight infants.
By the time Ethan was one-year-old he was diagnosed with spastic quadriplegia, a form of CP.
CP affects Ethan’s arms and legs making them very stiff
and, despite the big smile on his face, even the simplest of tasks are painful and difficult for the youngster.
However with the help of a surgery called Selective Dorsal Rhizotomy (SDR), Ethan will not only be pain-free, but he stands a chance to be able to walk on his own.
“Every day we see him in pain, unable to do lots of the things that most of us take for granted.” says his mother Melissa Jones.
“At night he can’t even turn himself over so he calls out to me to turn him over.”
When Ethan was born, Melissa says she and husband Owen were told he would likely be a vegetable, never able to walk, talk or do anything for himself.
“Here he is, talking, eating and doing so many things they didn’t think he would be able to and as long as he doesn’t give up, neither will we,” she says.
Melissa says the SDR surgery involves snipping the nerve that causes Ethan’s muscle stiffness, allowing him to move and function more comfortably.
“For us it’s about giving him the best life he can live. He will finally have some independence and not be living in constant pain,” she says.
“This surgery will guarantee he will be able to walk with the assistance of a walker or crutches and it’s his only chance to ever be able to walk independently.”
Following the surgery, Ethan will have to completely retrain his muscles, much like a baby learning to walk for the first time.
The surgery is not available, nor funded, in New Zealand and with a $150,000 price tag, the Jones family has been fundraising to cover the costs.
This September they will be hosting their final fundraiser to raise the remaining $40,000 needed to cover post-surgery rehabilitation for Ethan.
Ethan’s Wish to Walk Comedy Night Fundraiser is on Saturday, September 7 at the Howick and Pakuranga Netball Court Hall, Lloyd Elsmore Park.
The comedians include Eli Matthewson, Angella Dravid, Paul Douglas and others.
To purchase tickets for $40 per person or to make a donation, email firstname.lastname@example.org.
Businesses or individuals are also invited to donate products for the fundraiser’s auction and raffle.