Queensland teenager's rare condition threatens to close her airways

The 15-year-old has a rare condition where her organs and bones grow up to four sizes larger than they should be.

By Bettina Tyrrell
A Queensland family are desperately seeking help to save their daughter, whose rare bone condition is threatening her life.
Tori Punch, 15, of Bundaberg was born with Proteus Syndrome, a rare condition thought to only affect around 200 people worldwide, characterised by the overgrowth of bones, skin, organs and tissue in the body.
Bundaberg teen, Tori Punch, has a rare condition where her organs and bones grow up to four sizes larger than they should be.
For Tori, some of her organs and bones have grown out of proportion and are now placing a great threat on her health. Particularly, her breathing. The bones in Tori's neck have grown four times the size of what they should be, closing in on her airways and reducing her airways to the size of a baby's, said her worried mum Wendy Punch.
"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," Ms Punch told News Corp.
Tori's mum also added that her daughter has a high tolerance for pain, so it is hard to tell when she is actually, seriously hurting.
Tori's worried mum, Wendy Punch, is desperately seeking help for her daughter.
Adding to the frightening situation, the family are also facing huge medical expenses as they seek expert help to save their daughter.
"Once we start seeing specialists in Brisbane will have a lot of trips to and from Brisbane Hospital," Ms Punch wrote on a Go Fund Me page created for her daughter.
"It's an eight-hour trip there and back home."
The family are attempting to raise funds to help Tori battle the syndrome, including purchasing 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.
If you wish to donate to Tori, visit her Go Fund Me Page here.