Vyron Smith (Ngāi Te Rangi, Ngāti Ranginui), left a promising rugby career behind to help save his whānau.
First, he moved to Melbourne to help his brother, who was struggling mentally, physically, and with a few heart attacks on the horizon, to lose weight.
Then two years ago, Smith's father, Evan, was diagnosed with kidney disease and needed a kidney transplant, and Vyron stepped up to donate one of his kidneys.
But now he's battling a fight of his own, after developing an extremely rare, life-threatening and progressive auto-immune disease called, Atypical Hemolytic Uremic Syndrome, or aHUS, where the body is trying to filter blood but platelets are clotting up kidney function.
Smith recalls the first time he felt the symptoms before being rushed to the hospital and diagnosed with the rare disease.
“It was tough but it happened pretty quickly over two days, with low energy one day and then I had a really sore lower back on my right side the next day and I thought that may be an infection in my kidney.”
Smith says that he isn’t sure what caused the disease but is very grateful to those that donate plasma, which helped save his life.
“I underwent the plasma transfusions for nine days straight in the hospital. That process is pretty intense and it’s pretty intense on the body going through that sort of recovery.”
The medication that Smith needs for the rest of his life is called Eculizumab, marketed under the brand name Soliris, and is not funded in Aotearoa for aHUS. It would cost Smith $670,000 a year to buy it from the United States.
“There is an option to go over to Australia. To start that process is just being placed on the Medicare list … that’s another option there but wanting to stay home in Aotearoa,” Smith says.
Go Fund Me
Smith’s brother, Jermaine, or Jah, has set up a Go Fund Me page called, Help Vyron Stay Strong and he speaks about how his brother always put others first before himself.
“I am so grateful and appreciative of everyone that has donated or been to the New Zealand Blood Service and donated plasma and blood, it’s really important.”
Smith says the money raised from the Go Fund Me page will either help toward moving to Australia and getting the heavily subsidised medication that is needed for his disease or staying in Aotearoa and waiting until the medication is subsidised.
Donating plasma or blood
Smith has also dyed his hair orange to raise awareness of the need for people to donate plasma or gold.
“I didn’t really know too much about it before. I went into the hospital and I was needing these donations from these amazing people that donate it but I’m learning more about it. It’s liquid gold, as they call it and I believe that it’s a good name for it.”
“We need people donating plasma and or blood and I’m just raising awareness, starting the conversation because we need 2,600 donations a week to keep up with people that have these sorts of conditions like I do because they do help people with autoimmune conditions.”