Baby blues
Harper’s ultra-rare condition
For nearly her entire first year, Harper Elers was a medical mystery. Now, finally, her family have an answer. She’s one of about 100 people in the world with an ultra-rare condition called neonatal onset multisystem inflammatory disease, or Nomid.
Harper’s skin was bright red when she was born and stayed that way for about a week. After that she kept suffering severe rashes and fevers.
Her mother, Toyah Bavidge, took her many times to the doctor, the hospital and even sought other opinions to try to figure out what was wrong with her daughter.
Harper was constantly covered head-to-toe in a horrible rash which caused discomfort and pain, Bavidge told the Herald.
Nearly a year had gone by before Harper was referred to hospital by a new doctor, where she started having blood tests, scans, x-rays and an MRI.
She was taken to Starship hospital for two more weeks of intense testing and saw several doctors and specialists
before being diagnosed with Nomid. The US National Institute of Health says only about 100 cases had been reported worldwide.
Bavidge believes Harper is only the second person in New Zealand to have been diagnosed with Nomid.
The New Zealand Organisation for Rare Diseases said Harper’s family were the only people who had asked for support with Nomid and without a national register for rare diseases it was impossible to tell how many others had it.
There was no known cure but patients could use a daily injection of a drug called anakinra to fight inflammation.
Bavidge said Harper’s prognosis was widely unknown and only time would tell. “There is a study that estimates about 20 per cent of children with Nomid make it to adulthood but as there are such limited cases that may not be that accurate.”
Doctors couldn’t say whether Harper would even be able to walk or talk but she has been referred for various different therapy treatments for support.
“I don’t know how to describe it, everything has been turned upside down,” Bavidge told the Herald.
“Everything has just changed, it’s not normal life any more. We’re between home and hospital and a lot of travelling back and forth.”
Bavidge’s home, with partner Zed Elers and daughters Isabella, 8, Laylah, 2, and Harper, is in Waipukurau.
Since Harper’s diagnoses of Nomid, the family have had to travel between their home, Hastings Hospital and Starship in Auckland, making it hard for Harper’s parents to work full time.
They were also struggling to get to hospital appointments because of mechanical issues with their car.
As well as the rash and fevers, Harper often lacks appetite and has arthritis in her joints, making movement very painful.
Despite turning 1 last month, she is still unable to sit unsupported and has never crawled or rolled over.
Next week Bavidge and Elers will be taught how to give Harper her daily injection at home.
The Government is picking up Harper’s $30,000 cost for Anakinra injections for 26 weeks but, after that time, the family will have to reapply.
A Givealittle page for the family had raised $1020 by yesterday.