$500,000 a year to keep toddler alive

MARYKE PENMAN
Last updated 05:00 05/02/2013
Jethro Morrow
RARE CONDITION: Jethro Morrow is suffering from Atypical Hemolytic Uremic Syndrome.

Relevant offers

Health

Base Woodbourne in Marlborough goes smokefree, RNZAF to follow No toilets, locked up and forcibly medicated, claims lawyer Helensville District Health Trust puts family first Marlborough Primary Health Organisation prepares business case for new GP practice and daytime urgent care centre Burns victim scores spot in positive body model search Auckland Council drops sugary drinks from vending machines at leisure centres Maia Health hits $2.2m of $5.2m fundraising target Fluoride off health board agenda until legislation passed Fluoride could become DHB election issue Canterbury Charity Hospital founder Phil Bagshaw slams Government data on unmet need

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.

Ad Feedback

- North Shore Times

Special offers
Opinion poll

Should fluoride in water be the responsibility of central government?

Yes

No

Vote Result

Featured Promotions

Sponsored Content