Hope for Harper over rare illness
Treatment for tot as condition is identified
For nearly her entire first year, Harper Elers was a medical mystery. Now, finally, her family has an answer. She’s one of about 100 people in the world with an ultra-rare condition called neonatal-onset multi system inflammatory disease, or NOMID.
Harper’s skin was bright red when she was born and remained that way for about a week. In the year since, she’s suffered numerous severe body rashes and fevers.
Her mother Toyah Bavidge took her for multiple visits to the doctor, the hospital and even sought other opinions 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 undergoing blood tests, scans, x-rays and an MRI.
She was taken to Starship children’s hospital for two more weeks of intense testing and saw a number of doctors and specialists before she was diagnosed with NOMID.
Bavidge believes Harper is only the second-known person in New Zealand to have been diagnosed with NOMID. According to the United States’ National Institute of Health only about 100 cases had been reported worldwide.
There is no known cure for NOMID but patients can use a daily injection called Anakinra to fight inflammation. The drug costs $30,000 per year.
“I don’t know how to
describe it, everything has been turned upside down,” Bavidge said. “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 lived with her partner and three daughters — Isabella, 8, Laylah, 2, and Harper — in Waipukurau.
Since Harper’s diagnoses of NOMID, the family has had to travel between their home, Hastings Hospital and Starship in Auckland.
As well as the horrible rash and fevers, Harper often has a lack of appetite and has arthritis in her joints, making movement painful.
Despite turning 1 last month, she was still unable to sit unsupported and has never crawled or rolled over.
“It’s going to be a very long road of trying to get her limbs to work,” Bavidge said. “A physio team are going to make her a special seat so she can sit unsupported and eventually put some weight on her legs, she doesn’t weight-bear.”
Next week Bavidge and her partner Zed Elers will be taught how to give Harper her daily injection so they can give it to her at home.
The Anakinra drug made Harper much happier and she has been able to stretch her legs out and reach above her head, something she couldn’t do otherwise.
“Because it is an immunosuppressant, they want to give her the 15 months live immunisation early to boost her immune up,” Bavidge said.
“She’s been off it for two weeks, she’s had her live immunisations and so next Monday we go back to Hastings Hospital and they’re going to start Anakinra full-time.
“After she’s been on it for two weeks we need to go back to Starship hospital. We’ve been told our lives are going to be between Starship, Hastings and 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.
Meanwhile, a Givealittle page has been set up by Harper’s aunty to help raise funds for her treatments and to help the family purchase a reliable car.