Overcoming Adversity

Posted by Gabe on May 20, 2010 under Kids are Heroes | Read the First Comment

This post is a bit different than I am used to writing, but I felt it to be important none the less. I just received an email from one of our heroes’ moms that explains in detail the affliction her son suffers from. The reason she wrote it was not to gain sympathy, but more to help other people that may know someone who is suffering with something similar as often the disease is misdiagnosed. I decided to post it for the same reason. The hero’s name is Ricky Springer and he is just eight years old.  He races go-karts, and all the money he raises goes to research to help find a cure for his disease.   Here is his profile on the Kids Are Heroes web site.

From his mom:

“As you may know, our son Ricky suffers from an Eosinophilic Gastrointestinal Disorder (EGID) called Eosinophilic Colitis(EC).  This disease, which only affects his colon, renders his body unable to tolerate many food proteins.  For Ricky, his symptoms are like that of a lower GI virus when he eats foods that his immune system has decided are “invaders”, like a virus would be.  He experiences non-stop abdominal pain and cramping as well as diarrhea.

Ricky suffered in horrible pain for the first 21 months of his life.  We took him to 14 pediatricians, 2 gastroenterologists and 2 allergists, and none of them could tell us what was wrong.  We got answers like “This is just the way he poops”; “He’s just a miserable baby”; “You must be giving him something to make him sick”.  I was accused of Munchausen Syndrome by Proxy (a form of child abuse in which a parent induces a real or apparent symptoms of a disease in a child) and poisoning my child.  He looked fine.  He looked healthy.  Yet he was not fine, or healthy.  It took my resorting to spending WEEKS searching the internet, trying to figure out what was wrong with him, to come up with a plausible explanation.   Fortunately, thanks to the help of The American Partnership for Eosinophilic Disorders (APFED), I was able to locate a doctor at Cincinnati Children’s Hospital who was willing to figure out what was wrong with Ricky.  And finally in June 2003, Ricky was diagnosed with EC.  For the next 1 1/2 years Ricky would live off of an Elemental Formula, that he could drink or receive through a feeding tube in his stomach.

Today, Ricky is doing GREAT!  We are at the point that unless he has issues, we no longer need to visit Cincinnati every three months like we did for years.  He is eating a full range of foods, and can even eat out, at Longhorn or Outback!!!

In October 2009, our oldest son, Rusty, was diagnosed with Eosinophilic Esophagitis, the same disease Ricky has, but for Rusty it affects only his esophagus.  Rusty’s  symptoms mimic that of Reflux, causing pain so severe in his upper body that he feels  like he can’t breath, or is having a heart attack.  Reflux medicines do NOTHING to help, as it is not stomach acid as with true reflux causing these symptoms, but actually his immune system reacting to food proteins. Fortunately for Rusty, I had the knowledge to suspect that he was suffering from the same disease as Ricky.  Still though, our own pediatrician argued that he could not have EE and tried to dispel my concerns.  We immediately took Rusty to a very knowledgeable GI in Greenville, SC.  After extensive testing, we were able to come up with a list of foods that appeared to “trigger” his immune system.  We have since removed all of those foods from his diet and he is doing better.   It has been rough emotionally though…dealing with a teenager and telling him he can no longer eat tacos or pizza—NOT because of the acidity, but because they contain his “triggers” like  soy, corn, bleached wheat flour, etc.  However, we are blessed to know what foods set off his  immune system and he did not need to suffer like Ricky did.

Because of my desire to see NO other mother struggle like I did to get answers, I have worked as a volunteer for APFED since Ricky’s diagnosis.   And Ricky, whose passion is that no child should suffer like he did, initiated the Racing for a Cause campaign, where he uses his racing as a platform to educate others.  It is our family’s passion to make a difference for others who are suffering with this disease and trying to get an accurate diagnosis and treatment.

Sincerely,

Julie A. Springer”