Fundraising for APFED in Honor of Charlie

As many of you know I am one of the Founders of APFED.  American Partnership For Eosinophilic Disorders. 

Back in 2001 we, the parents and adult patients, were all so desperate for community and support and information.  No one had heard of an eosinophilic disorder little less could say that big crazy word.  It was desperately isolating as a mother.   I found a community of other parents online; and I researched and educated myself as much as I could.   I questioned my doctors and I questioned them again.  White blood cells attacking his digestive system.  Esophagus. Stomach. Intestines. Colon.  All of it.  That is the super short, simplified version of his disease. His entire digestive system had big problems.  

The reality? He violently projectile vomited 20-30 times a day.  We could not go anywhere without spare clothing.  Multiple sets for him and for me.  He screamed in extreme pain relentlessly.  He didn't sleep through the night until he was FOUR.

At age 2 Charlie required the placement of a feeding tube.  This is after a short stint on TPN.  (intravenous feeding)  They said he would likely never come off of the tube feeds.  We live in a society where the food at the events in life are planned first.   He was never going to eat (by mouth) again?   Did not compute but acceptance was all I had.

After two years Charlie started his first food- Rice.  After months of fighting the insurance company to cover his medically necessary formula, this was such a win.  ONE FOOD!!! When the same insurance company found out he now had rice in his diet... and by rice, I mean only rice.  No seasoning except salt- just rice, they tried to stop covering his medical foods.  A whole new fight ensued.  We won again but not without great expense.

It took 10 years on that feeding tube but Charlie fought through and found enough foods to come off of that tube.  HE did it.  No one else.  He endured every painful failed food trial that could last up to three weeks just to start the process all over. With all of the medical challenges he endured relentless bullying and Charlie was determined that his middle and high school years would not include the feeding tube.   He had won that battle against his own body and had defied what "they" predicted!

At age 14, after years of complications, years of being on steroids and requiring methotrexate injections, hospitalizations, unexplained complications he arrived at another diagnosis of a mitochondrial disorder.  This one is life-threatening and there are many kids with eosinophilic disorders with overlapping diagnoses of "mito" or other disorders.  Not enough research to understand this patient subset yet.

NO ONE gets how his life has been.  No one except others who live it.  We go to the APFED meetings when we can and he loves to be around his peers and he especially loves to mentor the younger kids.  Really he just loves to be around other people "like him" who know what his life is like.  For one weekend a year- he says he feels "normal".   He looks forward to it with such a sense of visible joy.  Not just because of the 'normal' thing though- but that he has an extended family.   That even if he has not met someone before they share something and they are instantly kindred spirits.  

With this short version of his medical story, I have to say my son is so! SO! much more than his diagnosis.  He is a compassionate, respectful, thoughtful, intelligent young man.  He is a gifted photographer, a lovely singer, he played lacrosse when "they" said sports would never be a part of his life.  He has had some medical setbacks but he continues to fight through them but continues to press on with his interests in life.  

I have often sat back and wonder about how it has been for Charlie on the inside as he rarely complains.  I know it has not been easy and every now and then he'll say, "this sucks."  and I say, "Yes.  Yes it does."  He has struggled and he has persevered and he sets an example of enduring strength to me constantly.   I can only hope I've tried to be the right example for him.  

With that, I ask that you please support this community that represents SO VERY MUCH to our family.  Any amount (even $1) moves me closer to the goal of giving back and supporting the mission of the organization.  Support. Awareness. Education. Research.  All so equally important to one another.  

THANK YOU IN ADVANCE!