Gold Coast girl’s seven year wait for lifesaving treatment

A bone-marrow transplant is this Gold Coast teenager’s only hope of a healthy life, but the wait for the right donor has stretched on for years.

DESPITE the bright smile, 14-year-old Tori Bowd’s young life is on hold as she suffers a rare blood disorder and an agonising wait for lifesaving treatment.

Diagnosed with sideroblastic anemia at birth, Tori must have a blood transfusion every four to five weeks just to stay alive.

A bone-marrow transplant is the teen’s only hope of a healthy life, but the wait for the right donor has stretched on for years.

“When she was seven we were told we would have a donor within six months. We have now been waiting for seven years,” said Tori’s mother, Tania Bowd.

THE DAY I GOT THE CALL THAT SAVED MY LIFE

Tori Bowd a resilient 14-year-old has waited her whole life for a bone marrow match. Picture: Tertius Pickard.

The World Bone Marrow registry is yet to receive a tissue match for the Upper Coomera girl.

“We will continue to wait, people think you have to be deceased to donate, but you don’t,” Mrs Bowd said.

“Every marrow donor, every donation of blood means something. A lack of blood could mean her life.”

Because of the frequency of the transfusions, excess iron has built up in Tori’s body, severely damaging her pancreas.

The levels are now at a point where Tori needs to have insulin, and an infusion pump for 10 hours each night.

Tori bravely attends school – Upper Coomera State College – but loses a day of her education each month for the treatment and sometimes when she is too ill to attend.

Despite her resilience, the disease has taken its toll.

“Every month we wait, you know it just takes away from her,” Mrs Bowd said.

“The longer Tori waits, the more damage the iron does. It eventually just shuts organs down.

“All we need is a donor.”

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Tori, 14, and her mother Tina Bowd at home. Picture: Tertius Pickard.

Mrs Bowd said she would swap places with her daughter in a second.

“I wished it could happen to me, not her,” Mrs Bowd said.

“When she was younger it was easier. Now she doesn’t want to be there anymore.

“Fourteen is too young to be losing hope.

“Everything worries me.”

Regular hospital visits had added to the financial stress on the family.

“We are constantly buying insulin needles, hormone patches and tubes, just when you think of all the time lost in hospital,” she said.

“I would hate to think of what I have paid in carparking over the last 14 years.”

Tori Bowd receiving one of her life-saving monthly transfusions.

In 2014 the family launched not-for-profit Tori Brae Fashion Foundation, which sells a range of women’s clothing and accessories to help cover costs.

“Anything that can be done to help is wonderful but out biggest message is for more blood and bone marrow donations,” Mrs Bowd said.

The northern Gold Coast community will rally in support of the family on February 8 at a Clubbercise, Zumba and exercise fundraising night, to be held at Helensvale State High School.