The family of a 16-year-old girl fighting an excruciating disease is seeking the public's help to cover the cost of a supposed miracle treatment she so desperately needs.
Moana Ruhfass was diagnosed with chronic regional pain syndrome (CRPS) in 2013 when she was just 11 years old, following a "seemingly innocent ankle injury," her father, Manfred, wrote on GoFundMe.
CRPS is a form of chronic pain that usually affects an arm or a leg and typically develops after an injury, a surgery or a stroke or a heart attack, according to the Mayo Clinic. The pain is characterized by being out of proportion to the severity of the initial injury. Although there is no cure, improvement and even remission are possible with treatment.
The condition, which is said to be more painful than childbirth and has even been dubbed "suicide disease" due to the high rate of sufferers who contemplate ending their own lives, has wreaked havoc on Moana throughout her early teenage years.
"Moana's condition deteriorated to the point where she was constantly crying and screaming with pain, the slightest breeze could trigger a severe pain reaction in her leg, and Moana was unable to walk, and was confined to a wheelchair," her father explained.
Moana's parents eventually moved from their home in Greece to Australia so she could attend a specialized physiotherapy program at the Sydney Children Hospital to try and combat the disease.
"The therapy treatment lasted ten long weeks, with Moana bravely enduring 10 hours of physio-therapy each and every day, in agonizing pain as the therapists tried to desensitise, and reset the pain perception in her neuro-pathways," her father wrote on GoFundMe. "The therapy was partially successful, and enabled her to walk again, however, the unbearable pain she experiences remained constant."
The teen's pain has become so severe that she now experiences blackouts and non-epileptic seizures "with full-body convulsions which can throw her off the ground" once or twice a week, "lasting anywhere from 1 minute to up to 2.5 hours."
"The seizures and recovery time affect every aspect of her life, from her physical well-being and mental state, to the negative impact on her education, and social interactions with other children," her father said.
Just when the family's options were looking slim, they came across an ABC Australia article about the Spero Clinic, a holistic medical treatment center in Arkansas, which has successfully treated 5 out of 5 CRPS patients in the past year, including 13-year-old Romeo Paora.
Paora's struggle with CRPS began at the age of 9 when he injured his knee playing rugby. The condition went undiagnosed for 3 years and the pain became so great for the youngster that he asked his mother to buy him a gun so he could end his life. After undergoing a 12-week treatment program at the Spero Clinic, Romeo says he "can do anything now with no pain," adding that, "I am not sore and life is amazing."
Moana's family is looking to raise $65,000 to cover both the cost of the program and the cost of flying her and her mother to the U.S. so she can hopefully have such a positive outcome.
"This clinic is the only centre in the world, with lasting success in treating this disease," her father wrote on GoFundMe. "All children deserve a life free of pain which is something many of us take for granted. This is our last chance for Moana!"
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