Building awareness of rare disease

MORE AWARENESS: 18-month-old Travis was diagnosed with Kawasaki Disease, pictured here with twin sister Leah and mum Sarah Langenbaker. Photo: Barry Smith 200514BSA03

MORE AWARENESS: 18-month-old Travis was diagnosed with Kawasaki Disease, pictured here with twin sister Leah and mum Sarah Langenbaker. Photo: Barry Smith 200514BSA03

ONE Tamworth woman is hoping more awareness of a rare condition will help families like hers.

Tamworth’s Sarah Langenbaker’s son, Travis, was diagnosed with Kawasaki disease when he was four-and-a-half months old.

It is not known what causes the uncommon illness, but Ms Langenbaker said it could be something as common as the cold virus.

It all began when now 18-month-old Travis, a twin of sister Leah, had a high temperature, high heart rate and a rash.

He then developed cracked lips, nose bleeds and the skin on his hands and feet started peeling.

Ms Langenbaker said it took more than a week to diagnose because it was so rare, but once Travis started receiving treatment, he was back to himself.

“He started treatment, which is like a blood transfusion that has antibodies in it,” Ms Langenbaker said.

“Then we went to John Hunter Hospital for his first heart scan and that’s when they found he had a large heart and damage to both left and right arteries.

“How are you supposed to feel if you’re told your five-month-old could have a heart attack?”

Ms Langenbaker said it affected Travis’ joints and hurt him to move his hands and feet because it made the blood vessels swell up.

“It can flare up again, like a flu, so every time he gets sick now, I’m at the ER within seconds,” she said.

“He will probably have heart problems or heart disease when he is older and it might affect his joints, so it could affect him later in life.”

She said she gained strength from her support unit – the family, partner Brad Stokes and best friend Jenny Hudson.

Ms Langenbaker said Travis had aspirin every day and annual check-ups at John Hunter Hospital.

She said she wanted to share her story to see if there were others out there living with the condition and so people knew about it.

“People I speak to have never heard of Kawasaki disease,” Ms Langenbaker said.

“It can affect any children from 0-five and some as  old as seven can get it, but I am yet to meet another mother in Tamworth who has a child with it.”

Ms Langenbaker said she would love to meet with other parents and have a support group in Tamworth.

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