When Kiwis give a lot
Two years on, we catch up with some of our most high-profile Givealittle campaigns.
Life-saving surgery far from home
Gendi Roberts enjoyed an energetic Kiwi childhood, including lots of rugby and swimming, but unlike other children she suffered hundreds of dislocations along the way.
At 8 she was told she had Ehlers Danlos Syndrome (EDS).
EDS symptoms include flimsy and hyper-elastic skin, unstable and hyperextensible joints, as well as fragile tissue and blood vessels.
As a teen her family learned the surgery she needed was not going to be possible in New Zealand and it was expensive.
Friends were quick to set up the Givealittle page when the family most needed backing and the campaign spread like “wildfire” in 2016.
Roberts told the Herald it had been “humbling” to see how many people wanted to help, especially when people who did not have much money to give still did.
After raising more than $25,000 on the crowdfunding platform Roberts travelled to Baltimore in January 2017 to have life-saving surgery.
“It stabilised my cervical spine with titanium implants,” she said.
In a dramatic turn Roberts also required brain surgery because of her condition. “It was such a shock,” Roberts said. “It ended up being pretty big. Recovery was awful, there was about a month where I was completely out of it and in so much pain.”
Roberts learned again how to talk and swallow, spending about three months abroad.
“It ended up being 10 times more lifethreatening than they had originally thought,” she said.
“The surgeon did not know how I survived the turbulence over on the plane. I was very, very lucky to go when I did.”
Roberts said she often reflected on what could have happened if she had not had surgery.
“I definitely wouldn’t be here, that’s for sure,” she said.
It was hard to know how to thank every single person who had contributed to her journey, she said.
“So many of the donors were anonymous.”
She felt incredibly grateful for every single person’s backing, even from those who could only spare a dollar, she said.
Her parents spent their KiwiSaver and remortgaged their house to look after her, she said.
“Unfortunately, we had to almost buy my life.”
Roberts was recently able to compete in the University Rowing Championships last year for the University of Otago.
“I’m doing pretty good, compared to what I was like beforehand,” she said.
“It’s crazy to think of how far we have come in two years.”
Roberts is working as a lifeguard during the summer and will complete her studies in medical laboratory science next year.
Elyse defies the odds
When Elyse Johnson was diagnosed with DIPG (diffuse intrinsic pontine glioma) in April, 2016, her family was told she had just months to live.
More than 21⁄2 years on Elyse has just celebrated her fifth birthday.
Her mother, Casey Johnson, said against all odds her tumour had been shrinking.
A 1cm reduction had made a huge difference — her little girl was once again trying to pick things up, trying to roll over and was eating again.
Elyse had even returned to kindy three times a week. “She loves it,” Johnson said.
The Johnsons credit the alternative therapies they use, instead of chemotherapy and radiation that doctors recommended, in helping the toddler.
But it comes at an enormous expense.
Looking back at the first Givealittle page the couple created, there had been initially such huge flurry of support with more than $60,000 donated.
“It was a bit overwhelming to be honest,” Johnson said.
But it was also amazing that so many people wanted to help, she said.
“I don’t have the words to say thank you, it’s just blown us away.”
The family have raised more than $100,000 just to keep her on cannabis oil, she said.
Elyse’s entire regime adds up to about $4000 a month, she said.
Cannabis oil, TBL-12 or sea cucumber, Vitamin C, and Liquid Hope (an organic, whole-food formula from the United States) all remained staples in her routine.
The Taupo¯ family is still fundraising on Givealittle for their wee girl. John-
son said it was no longer like caring for someone who was terminally ill, and the family had found their new normal.
“If it [the tumour] keeps shrinking over the next year she could start walking and talking again,” she said.
“All we can do is hope. Things could change overnight but at this rate it’s been really good.”
We bought a beach — for NZ
A pair of brothers-in-law captured the imagination of the nation with their bid to stamp Kiwi ownership into a slice of parade.
Adam Gard’ner and Duane Major raised more than $2 million to buy 7ha section of Awaroa Inlet to add to the Abel Tasman National Park in 2016.
The idea was sparked at a family Christmas gathering, ground zero for a “bit of banter” and “blue sky thinking”.
Gard’ner told the Herald both he and Major had seen the advertisement for the land and thought buying it for everyone would be the best Christmas gift.
A family member in the kitchen yelled out: “Well do something”.
The pair had just three weeks to foot the bill and knew they were not going to get there alone as they found themselves “venturing into waters” that had not been explored before on the crowdfunding platform.
“The thing was we actually always thought we could do it,” Gard’ner said. “We weren’t afraid of failing but we were afraid of not giving a go and giving it our best shot. It’s such a special place to us.”
The pair plan to go back there together in January.
“Our beautiful country shapes us into the people that we are and the connections that we make. Duane and I really feel that connection people have with the land.”
Looking back and having told the story countless times, Gard’ner said they had so much fun along the way.
“It’s humbling, it’s been quite a profound journey I would have to say,” he said.
“When you go out on a limb and give something a go, they will go out there with you.”
The great mates went on to support a Givealittle campaign to buy 112ha of native forest in Northland’s Wekaweka Valley in 2017.
Major still works as a pastor and Gard’ner works as a general manager for Tennis Canterbury.
Manurewa dad staying strong after cancer fight
Auckland’s Michael Williams crowdfunded his healthcare in 2016 shortly after being diagnosed with cancer.
The 34-year-old is the first to admit he suffered a “long list” of medical issues dating back to a congenital heart condition.
“I went in [to hospital] because I was having flu-like symptoms and they weren’t going away.”
He was diagnosed with an inoperable stage-4 melanoma near his small intestine which grew to 14cm in mass.
At Auckland City Hospital Williams started treatment with the chemotherapy drug Dacarbazine but reacted poorly to it.
William crowdfunded for Keytruda but would end up using the money to pay for the countless trips to hospital to and from Manurewa, as doctors instead put him on a funded drug called Opdivo.
Nearly $20,000 was raised on Givealittle making a “huge difference” to the family and the support gave Williams “the strength to keep going”.
“We are financially strapped as it is,” he said.
“We were able to get through two years of constant hospital visits and health issues.”
For the past six months Williams has been off the drugs altogether because there is no signs of regrowth of the melanoma.
For Williams it is a gift to have more time his wife, Mele Siniva, and their 3-year-old, James, who was born just before Williams was diagnosed.
Williams said he was incredibly proud of his “happy-go-lucky” son, who always doted on other smaller children.
“I was scared I would end up missing out on a lot of his stuff, not being there for Siniva while she grew with James and looked after James,” Williams said.
“But I spend as much time as I can trying to make a happy life for all of us.
“I feel indebted in life to every single person.
“To be given this extra time, this little bit extra — how ever much more I have — I am just so pleased that I get to continue being with family,” he said.