Make-a-wish family pays it back
Parents’ memory of youngster’s joy a reason to fundraise $10k to help others, writes Hayley McLarin.
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 into their teens.
Now 12, James is deaf, has heart disease and a range of orthopaedic issues including degenerative arthritis of the spine that requires spinal surgeries.
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 and it’s something they have been monitoring closely.
Surgery was postponed twice before Christmas, so this is the third delay, and a new date hasn’t been set – although 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 connect with his greater family network – particularly in his home city of Christchurch – and be entertained, play games and feel like a normal five year old.
For his parents, Paul and Fiona, it was so much more.
‘‘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.
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 become 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. 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 a 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.’’
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.’’
‘‘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.’’
Paul Marquardt
Adventure All Stars is on TVNZ1, 2pm, Sunday, April 19