Jethro's condition is maintained with plasma infusion treatments each week. Eventually he will need the experimental drug Soliris at a cost of $500,000 a year. The drug is funded in 40 other countries, including Australia, but not in New Zealand. Sufferers of a similar disease, known as paroxysmal nocturnal haemoglobinuria, want Pharmac to fund Soliris.
The family were dealt another blow recently when Jethro was diagnosed with Asperger's syndrome. "We are just adjusting to that side of his personality now," Gantley said.
Donations from friends, family and strangers amount to about $1000 a week.
Gantley and Morrow hope 10,000 individuals will sponsor Jethro for $1 a week. That alone would 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.
For more information, go to the Facebook page Support Jethro website.