Teenager's rare condition threatens to close her airways
A Queensland family is desperately seeking help to save their daughter, whose extremely rare bone condition is threatening to close her airways.
Bundaberg teenager Tori Punch is one of only around 200 people to be affected by the crippling growth disorder known as Proteus Syndrome that sees organs and tissues grow out of proportion to the rest of the body.
The 15-year-old faces an uncertain future as the bones in her body continue to grow to four times the size of what they should be.
Her nervous mother, Wendy Punch, said the brave youngster has a high tolerance for pain so it means it is hard to tell when she is actually in pain.
"Her airways are showing, in the tests she'd had done, to be the size of babies' airways,” Ms Punch told News Corp.
"At the moment we've got her at home because I'm a bit concerned about sending her to school in case she gets knocked in the neck area.”
Adding to their dire situation, the family now faces another series of expenses as they seek expert help.
“Once we start seeing specialist in Brisbane will have a lot of trips to and from Brisbane Hospital,” Ms Punch wrote on a Go Fund Me page for her daughter.
“It’s an eight-hour trip there and back home."
The funds would also be used to help buy a special bed that helps monitor her breathing while she sleeps.
“All we can do is hope and pray and see where we go from here,” Ms Punch said in a video posted to Facebook.
To keep up to date with Tori's journey, head to her Facebook page 'Prayers for Tori'
