A young family is facing the daunting prospect of raising half a million dollars a year to keep its 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 patients reported worldwide.
Without weekly plasma infusions Jethro's kidneys would soon fail and his life would almost certainly be at risk.
But plasma infusions are only a temporary fix. Sooner or later Jethro's body will no longer respond to them and he will be left with no other option but to take Soliris.
The drug has been proven to cure those with Jethro's condition.
It is funded in 40 other countries, including Australia, but not funded in 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.
Ms Gantley says 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 says.
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 says.
Donations from friends, family and strangers amount to about $1000 a week. Ms Gantley and Mr Morrow are now pushing for 10,000 individuals to sponsor Jethro for $1 a week. That alone will fund Jethro'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," Ms Gantley says.
Go to facebook.com and search Support for Jethro Morrow for information.
North Shore Times