A young family is facing the daunting prospect of raising half a million dollars a year to keep a sick toddler alive.
Glenfield youngster Jethro Morrow, 3, is the only person in New Zealand with the genetic condition Atypical Hemolytic Uremic Syndrome.
A drug, Soliris, seems to be his only hope but will cost $500,000 a year because it is not subsidised in this country.
The condition causes the destruction of red blood cells, acute kidney failure and a low platelet count. It mostly affects children but is extremely rare with just several hundred cases reported worldwide.
Without weekly plasma infusions Jethro's kidneys would soon fail, putting his life at risk. These are only a temporary fix, however, and he will be left with no other option but to take Soliris - which has been proven to cure those with the condition.
The drug is funded in 40 countries, including Australia, but not New Zealand. Patients with a similar disease known as Paroxysmal Nocturnal Haemoglobinuria are waging a constant battle with Pharmac to have Soliris funded.
Meanwhile, Jethro's parents Shannon Gantley and Louis Morrow are attempting to fundraise.
Gantley said their lives were turned upside down when Jethro was diagnosed with the condition at just eight months old.
"It's pretty scary when even some of the hospital staff are puzzled by it, it's that rare," she said.
A continuous trial and error process has found Soliris is the only guaranteed treatment.
"It seems a pretty unrealistic goal to raise half a million dollars each year but when it comes to your child you do anything," she said.
Donations from friends, family and strangers amount to about $1000 a week. Gantley and Morrow are now pushing for 10,000 individuals to sponsor Jethro for $1 a week.
That alone will fund the toddler's dose of Soliris.
"It's such a small amount people will barely notice it gone, but it would make the world of difference for Jethro," Gantley said.
Go to facebook.com and search Support for Jethro Morrow for information.
- North Shore Times