Little Jack Vernal (3) smiles as he “commando crawls” around the living-room floor, making a beeline for mother Kathryn and a big cuddle.
The sweet-natured little boy has faced enormous challenges in his young life as he battles the effects of a severe form of spina bifida (myelomeningocele) and other physical issues.
Jack has undergone 12 operations in his short life so far. The first major spinal surgery was done just 13 hours after he and twin sister Leah were born by Caesarean section in Christchurch Hospital.
“Jack had been diagnosed before birth, so the doctors were ready for him,” Ms Vernal said.
She saw Jack for only a few minutes before he was whipped away to Auckland, accompanied by father Stu Barnes, for surgery.
In the years since, Jack has undergone many surgeries, including to install a shunt to drain cerebral fluid from his brain, to remove a diseased right kidney, to install a gastroscopy for him to be fed through, to create a stoma for him to urinate through, to fix a hernia, and to perform a bilateral club foot release and an Achilles tendon release.
“Jack copes amazingly with it all – he just takes it in his stride,” Ms Vernal said.
Jack’s fraternal twin Leah is unaffected by disability and is a thriving, energetic youngster.
“Leah is wonderful with Jack,” Ms Vernal said.
“She loves to move him around the house in his walker and she is in tune with his needs and wants.”
Jack, who has developmental delay, is able to understand more than he can communicate, which can be frustrating for him.
“So it is lovely that he has such a strong partnership with Leah,” she said.
Ms Vernal and Mr Barnes, along with son Aydin (now 6), moved to Dunedin from Christchurch five years ago to escape the aftermath of the earthquakes.
Ms Vernal’s older son Alex Henry (12) is living in Christchurch with his father.
“The experience of the earthquakes was horrific; it was a huge mental challenge,” she said.
“It was a good decision to move to Dunedin. We love it here. It is so beautiful.”
However, the tyranny of distance has added to the pressure on the family, as they must travel regularly to Christchurch and Auckland for procedures.
The Southern District Health Board pays for flights but there are still the challenges of travelling to and from airports, food, and other expenses.
Because of the nature of Jack’s condition, which can deteriorate rapidly and result in weeks in hospital, Mr Barnes has had to relinquish his job to be able to care for the other children.
“It was a big decision, but we just had to do it. We have to take care of our family,” Mr Barnes said.
“It has taken its toll, emotionally, physically and financially,” Ms Vernal said.
Jack faces further surgery this year, firstly in Christchurch to remove his tonsils and adenoids, in order to open up his airways and prepare for a major spinal operation in Auckland.
The Vernal-Barnes family are being supported by members of the Leith Valley Presbyterian Church congregation through its “food share” programme.
Member Mark Lokman became interested after hearing about their plight from pastor Kristin Jack.
The situation was “close to home” for Mr Lokman, who remembered the strain his brother’s spina bifida had placed on his own family while growing up.
“I decided that I should be more pro-active in my support, which is why I have created a Givealittle page for them,” he said.
“I hope that other Dunedin people will want to pledge their support to this deserving family.”
The Jack Vernal Givealittle page can be found at: https://givealittle.co.nz/cause/help4jackvernal/donate.