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Two families recount bravery of their ill children

Kylie Tame and her 10-year-old son Reagen, who live in the Whitsundays, say Ronald McDonald House in Brisbane is their home away from home.
Kylie Tame and her 10-year-old son Reagen, who live in the Whitsundays, say Ronald McDonald House in Brisbane is their home away from home. Pamela Frost

IMAGINE being told your child might not ever leave hospital. That they're living on borrowed time and will not make it to their first birthday. Or you wake to find them not breathing.

This is what many Queensland families have endured. Whitsundays mum Kylie Tame is one of them. Her 10-year-old son Reagen suffers from a genetic disorder known as DiGeorge syndrome. He is missing part of a chromosome and doesn't have a full immune system.

He has a brain condition that affects less than 5% of the world's population, hearing loss, intellectual impairment, low immunity, low mineral and vitamin levels, poly inflammatory arthritis, nasal regurgitation and other issues.

Kylie said most children with DiGeorge were lucky to make their first birthday. When Reagen was four weeks old his parents were told that he wouldn't be leaving the hospital.

Then when he was released, doctors said he would not make it to his first birthday. But Reagen has defied the odds. Since his first birthday doctors have told Kylie that Reagen is living on borrowed time.

But Reagen is a miracle, his mother said. The family has been in and out of hospitals for most of his life.

Because of his poor immune system infections can be fatal to the youngster. But whenever they have needed to travel to Brisbane, Kylie and the family have always had somewhere to stay - Ronald McDonald House. Reagen calls it "Ronnie's house” and Kylie says it is like their second home.

Tim and Tyanah Willams and their daughters, six-year-old Kirra (left), and two-year-old Willow, from Kingaroy, are regular visitors to
Tim and Tyanah Willams and their daughters, six-year-old Kirra (left), and two-year-old Willow, from Kingaroy, are regular visitors to "Ronnie's place”. Pamela Frost

It's the same story for the Williams family from Kingaroy. Parents Tyanah and Tim Williams stayed in a Ronald McDonald House in Brisbane for more than a year when Willow, who is now two-and-a-half years old, became ill.

Willow has multiple food protein intolerance, auto immune failure, chronic gastritis and a gastrointestinal disorder known as EGID. She was considered normal when she was born, but would cry for 13 hours a day. Then when she was 23 days old, she took a turn. Tyanah noticed Willow had stopped screaming and made the horrifying discovery that she was covered in black stool that had come up through her mouth and had stopped breathing.

After that, they were at two hospitals in Brisbane for a more than a year in total. Until November last year, Willow was being fed by a tube into her stomach, but it did not seem to help her - she would constantly vomit and was malnourished.

Late last year doctors tried a different approach. They started feeding her through a tube into her bowel and she has been a different child ever since. Tyanah said her child had grown, had put on weight and had stopped getting viruses.

"We know that she could go any day - it's up to her,” Tyanah said.

"But we know for a fact that there is hope for her now.”

Kylie and Tyanah and Tim said Ronald McDonald House - or "Ronnie's place” as the children like to call it - was a home away from home. The families were among the first to test out the new Ronald McDonald House that has just opened in South Brisbane.

THE NEW HOUSE:

Brisbane's Ronald McDonald House helped 1620 families in 2015, most of them from regional areas.

On November 5, a new 70-room house that has the capacity to extend to 112 rooms - the biggest in the country - will be officially opened in South Brisbane. It is expected the new building will accommodate 50 more families than the previous house.

Topics:  family illness read



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