Paige Humphreys of Coraki fights second bout of rare medical condition

A Coraki 15-year-old is fighting her second life-threatening illness, and without any government support, the family is appealing for help. Read why the stakes are so high.

Father-of-four Andrew Humphreys with his daughter Paige.

The family of a 15-year-old Northern NSW girl who beat a rare illness that could have seen her bleed to death at any moment, is appealing for help as she faces her latest battle.

Coraki’s Paige Humphreys has been diagnosed with idiopathic pulmonary hypertension - high blood pressure in the vessels of the lungs, without a known cause.

It’s the second severe bout of the condition for Paige, and the first almost killed her.

In 2017, then 10-year-old Paige was diagnosed with a condition which blocked the blood flow from her digestive organs to her liver.

Needing to be transferred from Coraki to Brisbane for emergency surgery, and with her only hope a portal vein reconstruction in the United States, the Humphreys were forced to turn to crowd-funding after attempts for government support through the Medical Treatment Overseas Program were knocked back.

Paige Humphreys in the Children's Hospital of Chicago.

At the time, local MP Kevin Hogan said he had lobbied the government, but that they needed stronger evidence that the procedure in the United States would be more successful than the rex shunt procedure offered in Australia, one that the Humphreys were told had less than a 50 per cent chance of success.

With support from private donors, as well as local Lions clubs, the Humphreys raised almost $700,000 to be able to send Paige to the United States to be operated on by Dr Riccardo Superina in Chicago, a transplant specialist.

Making a successful recovery with the help of a blood pressure regulation drug known as treprostinil sodium, Paige was able to return home in 2017 and until now, has lived a relatively normal life, with a consistently improving condition.

With Paige’s new diagnosis, her doctors are appealing for more ready access to treprostinil sodium, which they say will allow her to leave hospital, as it is more stable than the alternatives available in Australia.

Paige has been on an intravenous drip in Sydney’s Westmead Hospital for seven weeks, which her parents say could see her die in as little as four minutes if the delivery stops.

Treprostinil sodium has been approved for use in the United States in various forms since May 2002, but the infusion system costs around $500,000, according to Paige’s parents.

With the family farm in Coraki flattened by floods, the Humphreys say they can’t put their property up for sale to fund the expenses, and with government assistance not being forthcoming the first time, are faced with an insurmountable task to be able to allow Paige to leave hospital.

The Health Minister has been contacted for comment.