A 6-year-old Tauranga boy has died after spending weeks in Starship Hospital in Auckland as experts hunted for a cure for his mysterious seizures.
Elias Buchanan and his family were looking forward to Christmas when Elias reported having a sore stomach, and then came down with a fever.
"He kind of came right and then went to work with me, and we spent the day doing normal stuff," his dad Kurt Buchanan said at the end of December.
His son had remained noticeably tired and sleepy, something his parents had first put down to fatigue from the busy holiday season.
They were later told by a doctor that he had glandular fever and that the tiredness was likely a side effect.
One morning, when siblings Judah, 4, and Esme and Teagan, 2, were all up and about, Elias was still fast asleep.
"I went to wake him and get him out of bed, and he was already having a seizure, so we quickly called the ambulance and he was rushed to Tauranga Hospital."
Tests showed Elias had been struck by a combination of an enterovirus and mycoplasma pneumonia, a common respiratory pathogen.
"We were told that the enterovirus was just a common virus that goes around and most people get it, but his body kind of went into overdrive and his immune system, instead of attacking the virus, started attacking his brain."
That is what had triggered his seizures, yet it was unclear why they were continuing, and doctors decided to send him to Starship Hospital, where he was placed in an induced coma.
"They said his case was one they hadn't seen before, so for the first few days they were trialling drugs and different combinations to see what his body would respond to."
Doctors turned to 15 of the best-known seizure medications, but instead of making gains, the drugs affected his pancreas and kidneys.
Other treatments were then used and international experts were consulted.
But on January 4, Kurt wrote on his Facebook page that "This morning our little Miracle Boy went to be with Jesus".
He and wife Rebecca Buchanan had spent weeks at Elias's bedside, with prayers and support all the while flooding in from across the globe.
"… Our hearts are extremely heavy and we are obviously very sad but we are thankful he is no longer in pain or distress and he passed on peacefully in our arms," Kurt's Facebook post said.
"We got to spend two weeks singing over him, talking to him, writing him notes, laughing and crying with him and all his family, although a really tough time it was time ... and that was really precious."
Yesterday another post by Kurt said Elias had been farewelled on Monday.
"One of the hardest days we've faced but beautifully tempered with the support, mahi and love we were surrounded with right from the start of this journey."
He thanked people for helping the family with the service, for their support, messages, financial assistance and for travelling from all over "to celebrate our son's life".
"We love you Elias – you will forever be in our hearts and a continual part of our family dynamic. You have brought so much joy to our lives and the lives of many others and as we hold you in our thoughts and hearts I pray that joy will outweigh the sadness of you not being here. Love you always our son!"
A Givealittle page has been set up for the family and last night had almost $7000 donated.