Superhumans Need Help Too
A life without pain sounds like a dream. Without pain, the world opens up with endless possibilities seen only in movies and comic books.
There is a young boy named Roberto who is living a life without pain, but it is not a dream. Roberto has a genetic disorder called Congenital Insensitivity to Pain with Anhidrosis (CIPA). Roberto and his family spent the early years of his life traveling from doctor to doctor in an attempt to classify this little known disorder. The last couple years have led to an official diagnosis as well as an outpouring of media attention for CIPA (it was featured ABC's medical drama 'Grey's Anatomy' as well as Fox's 'House'). CIPA currently affects only 17 people in the United States making doctors and treatments almost non-existent. CIPA gives individuals what many people would consider a superhuman gift but in reality, it curbs the everyday life and learning of each individual.
CIPA patients cannot feel pain or extreme temperatures, nor can they regulate their own body.
If you sit back and think about the things you have learned through the sensation of pain you come to fully realize the extreme disadvantages of CIPA. Even normal, everyday variants of pain are not felt by people with CIPA. Pangs of hunger are one sensation that a CIPA patient will never feel. As a result they never know when it is time to eat. For Roberto and other CIPA patients, eating is a learned behavior, not a basic need of life that everyone feels.
CIPA patients do not sweat and thus cannot regulate their own body temperature.
Can you imagine being a 5 year old child not allowed to play outside in the sun or run around for too long? CIPA patients risk overheating and killing themselves and their brain cells by being too active.
A life without pain is not the dream that many believe. One young boy, living without pain, needs help from everyone to keep him living a long and happy life.
Roberto is a 5 year old boy living in Indiana who has been diagnosed with CIPA. In addition, Roberto was also diagnosed with extreme Hyperactivity. CIPA and hyperactivity creates a deadly combination, greatly increasing his risk of overheating.
Doctors have projected that Roberto will be wheel chair bound by age 10 due to the everyday wear and tear he puts on his own body. At one point, Roberto walked on a broken foot for three days. Doctors have suggested that Roberto needs a therapy pool to exercise without the risk of injury or overheating. Roberto needs everyone to help him stay healthy and out of a wheel chair. You can learn more about Roberto, CIPA, and his need for a pool at HelpRoberto.com.
A major facet of the Help Roberto promotion campaign is the use of new methods and technologies. One of the areas that is neglected by the non-profit community are existing social networks that have sprung up in recent years. Having an article featured on the front page of digg, or reddit can greatly boost a website's lift and potential. That being the case, the Help Roberto campaign asks that visitors donate between $1 and $5. Hopefully, Help Roberto will make it to enough people that theses micro-donations will make a big difference.
For additional information on the Help Roberto campaign, contact [email protected] or visit helproberto.com.
photography by The Loft Photo