MEDIA RELEASES

Playing with Pokémon helps Jethro through transfusions

Shannon Gantley brings her son Jethro Morrow to Whangarei Hospital’s Children’s Ward on a Thursday each week. While the caring nurses and play specialists keep Jethro entertained, Jethro receives a transfusion of plasma to keep him alive.

Jethro, 6, comes to us from his home in Mangawhai each week because he requires plasma transfusions for atypical haemolitic uraemic syndrome (aHUS). This genetic, chronic, ultra-rare disease can progressively damage vital organs, potentially leading to stroke, heart attack, kidney failure, and premature death.

Shannon says the transfusion alone takes around 4.5 hours and including set-up, it’s a whole-day event – hence the importance of play specialists.

“Jethro’s got an amazing relationship with the play specialists here, in particular Rose Wood and Karen Caldwell,” Shannon says. “They know him well and know what his likes and idslies are. They are amazing in catering for his entertainment – toys, iPads, movies and Play-Doh. He actually looks forward to coming here.”

Jethro’s current obsession is Pokémon Go and his favourite Pokémon is Eevee. Jethro has managed to catch quite a few Pokémon in the Children’s Ward’s Adolescent Room.

It takes an astonishing 28 donors to give Jethro what he needs each week – that’s two bags of plasma per transfusion, with each bag containing plasma from 14 donors.

The transfusions have been occuring weekly since Jethro was 8 months old when Shannon rushed Jethro to Starship Hospital as his kidneys were failing from what was then an undiagnosed condition.

At the time, Jethro appeared to be the only child in NZ with aHUS. Five years later, as few as six children have been diagnosed with the genetic condition in NZ – and for the first three years of his life, Shannon and Jethro’s father Louis Morrow say they felt very alone.

The purpose of the weekly transfusions at Whangarei Hospital are to bring into Jethro’s blood the missing Factor H protein, which is deposited by the fresh plasma platelets.

Shannon says the plasma transfusions have kept Jethro’s health mostly stable for five years. Unfortunately Jethro’s story doesn’t end with the transfusions.

“He won’t  respond to plasma transfusions forever,” Shannon explains. “Once he stops responding, the only drug that will keep his illness under control is Soliris (eculizumab) which costs $500,000 a year.”

The drug is described by Forbes as the world’s single most expensive drug. As a result, Shannon has a campaign underway to get 10,000 New Zealanders to donate $1 per week to fund the Soliris treatment. The campaign has around $200,000 to go. Those wishing to donate to help can go to Jethros Facebook page: https://www.facebook.com/supportforjethromorrow/

Meanwhile, Shannon and Jethro are dependent on the 14-28 donors generously giving their plasma to better Jethro’s life.

“Only 1 in 8 people qualify to donate plasma,” Shannon says.

Ward 2 nurse Irene Dunn helps Jethro Morrow find Pokémon while he has his plasma treatment. Photo: Liz Inch



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