Its simple, because despite all of the negativity that we see bombarding our screens and filling up our minds, the majority of people are still good and caring with a deep desire to help each other.
Can you imagine living without tasting anything?
Let me introduce you to an amazing little boy that lives everyday without ever taking part in the most natural of all experiences. He lives without eating. At four years of age he lives only on a nutritional life support given to him through an IV, nothing enters his digestive system but ICE.
When our family gathers around the table at mealtime, he sits and eats his ice, enjoying it as if it was food. Cohen reminds us everyday to appreciate the little things. He never complains, in fact he gives thanks for his ice before eating it and after each bite he says, "Mmm yummy."
February 28th is Rare Disease Day, a day set aside to remind the world that there are rare diseases equally devastating as many of the well-known ones. Most of these individuals have had long hard journeys seeking a proper diagnosis and still others, like Cohen, may never know the name of the monster that attacks their bodies. It takes an average of four to seven years to finally get a proper diagnosis and even then there is little hope for a cure due to that lack of understating of these illnesses.
As difficult as it is to imagine, there are people dying from diseases that cannot yet be identified by science or are far to rare to have success with research funding. Many of these people have been told, just as we have, that, "We are waiting for science to catch up."
Committing to eating ice may seem like an insignificant act of kindness to most people but to one little boy who lives life in isolation, it means a moment of inclusion. It will provide great encouragement to him and others who experience this kind of aloneness. If one person asks the question, "How can I help people living with a Rare or Undiagnosed diseases?" then this challenge was a success.
I remember living in a world where I didn't have to think about children suffering, nor watch friends anguish in silence. But that world is not the reality for the estimated one in ten people living with rare diseases. Let's make them feel valued on February 28th and break their silence. Eat Ice. Spread Awareness. Join the fight against Rare and Undiagnosed Diseases.
Take part in the, "I'm Eating Ice for Super Cohen" Challenge at Super Cohen's Crusade FaceBook Page
Get creative with fun ways to eat ice, post your pics and Cohen will be the judge on February 28th
Please visit Rare Disease Day, Global Genes or Rare and Undiagnosed Network for more information on rare diseases and how you can help.
