20-year-old Heidi Theis lies on the couch, in the dark, covered in ice and wet rags without moving every day. Heidi suffers from a rare and extremely painful disease called complex regional pain syndrome or CRPS.
"To watch her go from enjoying the world and learning about the world to laying on the couch 24 hours a day 7 days a week and not be able to fix her has been very, very difficult," said her mom Stacie Theis, who couldn't hold back her tears.
CRPS affects the nervous system. It causes chronic pain. Heidi's problems started when the happy teen fell off a horse 2 years ago. Heidi broke her leg, tailbone and damaged her liver. The nerve damage in her leg never healed and developed into CRPS.
"She was showing signs of blistering she was burning from the inside. She kept describing it as someone removing the blood out of her body and injecting pure battery acid," said Dave Theis, Heidi's father.
That intense burning is worsened by light. So curtains block out the sun in the family's home, one candle lights the living room.
Heidi couldn't talk to us on camera, even talking is painful. It took 2 years to get Heidi diagnosed, the whole time Heidi suffered. There's no cure for CRPS. But there is a glimmer of light in Heidi's dark world. A doctor at the California Pain Medicine Centers at UCLA offers a treatment, Ketamine injections that ease the pain and might give Heidi her life back.
Now the family is fundraising to pay for the expensive treatment they can't afford and Heidi can't afford not to have.
"If we don't keep her moving she'll atrophy. Which is the last stage of this disorder," said Stacie.
For more information on how to help Heidi go http://heidisjourneyofhope.org/
You can print a flier on that website and visit Chili's in Orange Monday Sept. 23rd and the restaurant will donate 15% of proceeds.
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