By Kath Gannaway
ANYONE who finds a balloon with ‘Porphyria Awareness’ on it should just Google it.
Even that will put Healesville teenager Caitie Barlow one step closer to knowing that people understand what she is going through.
“I’m just hoping that people might pick up a balloon and question what it is all about,” said Caitie who was diagnosed with the rare and debilitating disorder last year.
Releasing more than 100 balloons at Maroondah Dam on Sunday 18 September was part of the Cruise for Caitie car rally awareness and fund-raising day organised by the family and friends she says are her lifeline as she deals with the pain and uncertainty of a disorder for which there is no cure.
The 16-year-old Healesville High School student was a normal teenager who loved dancing, horse-riding and school when the disorder hit out of the blue.
A nightmare 18 months has followed the first emergency dash to hospital after Caitie collapsed at home with excruciating pain in April 2010.
The attacks continued even after she had had her gall bladder removed and suffered through bouts of pancreatitis before being tested for porphyria.
The result was positive… and confronting.
“Being diagnosed was a relief, but to be told then that there was no cure, and they are not sure what they can do for me… that was the hard part,” said Caitie who says she feels down at times, but is determined to fight on with attitude.
Constant pain and vomiting, numbness in her right leg, hair loss and an immune system that is shot leaving her open to infections, are just part of life now.
“It’s not a life I would have chosen to live but it helps to know that I am not alone and the cruise gave me a lot of hope.”
Caitie’s illness has turned not only her world but her family’s upside down.
Her mother Bronwyn Sands said she is an inspiration, showing enormous mental strength and resilience.
Their immediate focus has had to be dealing with the symptoms of a disorder which Mrs Sands said is throwing up more questions than anyone has answers for right now.
“If there is treatment out there somewhere that would be fantastic… and we would go anywhere,” she said.
“But for Caitie it is also about raising awareness and support.
“A lot of the time she does feel very alone, and she often says there are others going through this and they should never be alone.
“That’s something she can do.”
Anyone who would like to help Caitie can phone 0430 237 351.
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