Surgery delayed, but family of 12-year-old boy with rare illness wishing for the best

James Marquardt with his parents Paul and Fiona and sister Maggie.

DAVID WHITE/STUFF

James Marquardt with his parents Paul and Fiona and sister Maggie.

James Marquardt knows a thing or two about being in lockdown.

At the age of five, he was confined to one small room in Starship Hospital for three months, his risk of infection high after receiving intensive chemotherapy and then a bone marrow transplant from his younger sister Maggie.

James is one of only two children in New Zealand with Hunter syndrome, a rare genetic condition that affects every system of the body and is a life-limiting condition, with children expected to live only in to their teens.

Now 12, James is deaf, has heart disease and has a range of orthopaedic issues including his worsening cervical spondylolisthesis (degenerative arthritis of the spine) that requires consecutive spinal surgeries to extend the contracted space between his skull and shoulders.

However the procedures have had to be delayed due to the Covid-19 crisis taking priority in hospital care.

James’ father Paul says the surgery has been on the cards for about three years now and it’s something they have been monitoring closely. 

Surgery was postponed twice from before Christmas, so this is the third delay, and a new date hasn’t been set.

It’s a slow process so there is no immediate impact to James’ health.

It was while he was recuperating from his marrow transplant in 2012, that James was the recipient of his “one true wish” from Make-A-Wish NZ. 

He was given an iPad, a way to not only connect him with his greater family network – particularly in his home city of Christchurch – but also the ability for him to be entertained, play games and feel like a normal five year old.

For his parents, Paul and Fiona, it was so much more.

The Marquardt family pictured in 2012.

STUFF

The Marquardt family pictured in 2012.

“We were away from home and knew nobody in Auckland. When you have nothing else around you and somebody reaches out and brings you some hope and joy, it has such an impact on you,” Paul says.

“For us it was about having something to look forward to. The countdown and the anticipation of the wish being delivered overtook the countdown of how many days he had been in hospital.

“It gave us something else to focus on. Rather than ‘we have been here for 21 days’, it became ‘Make-A-Wish is coming to visit us in five days’.”

James’ ongoing paediatric care prompted the family to move to Auckland five years ago, to lessen the family impact of regular visits to Starship. 

James Marquardt, ahed 10, with Riding for the Disabled in 2017.

DANIELLE CLENT/STUFF

James Marquardt, ahed 10, with Riding for the Disabled in 2017.

Paul and Fiona remain passionately grateful for the joy James’ anticipation had on the family – seeing a little boy who had been through 10 days of intensive chemotherapy and a bone marrow transplant where his immune system had been destroyed to becoming a little smiling kid doing what other kids his age could easily take for granted.

So last year the couple committed to raising $10,000 for Make-A-Wish, an act that culminated in Paul this weekend appearing in a TVNZ1 series featuring charity fundraisers. 

“This gave me the opportunity to fund wishes for other kids – to deliver more of what had made an impact on us, to people who needed that support,” he says.

Paul appears in Adventure All Stars, that takes charity fundraisers on an unforgettable trip to a mystery New Zealand location. Hosted by Erin Simpson, Paul joined five others who had fundraised for Make-A-Wish NZ to experience Northland – including parasailing, jet skiing, sand surfing, mountain biking and kayaking.

“I met great group of people who I will remain friends with, we got to share an amazing experience together for a common cause. We all wanted to deliver that support to families. 

“And I got to do a bunch of activities and the one that made an impact was the visit to the Waitangi Treaty Grounds. Being able to play the role of chief in that ceremony was powerful and quite moving. Not to mention I shot four out of five skeets at the shooting range.”

Marquardt says the timing of the series could not be more poignant. “Adventure All Stars will be a window to things you can do in your own back yard when the Covid restrictions are lifted.

“You will get to see a group of lively and enthusiastic people discovering how beautiful our country is – people won’t be able to take overseas holidays so we should get out and explore our own country.”

Adventure All Stars is on TVNZ1, 2pm, Sunday, April 19