June 22, 2010
My son was diagnosed with eosinophilic esophagitis as a baby in 2002. For three years, we didn't know a single family dealing with this condition. We felt so alone! So there we were, going to one doctor's appointment after another, receiving little concrete information, then left to go home alone and deal with it, day after day. In addition, no one around our family could relate or begin to understand the scope of what we were dealing with. We were truly isolated in a world of helplessness: What do we feed him? Is this hurting him or not? Why isn't he growing? Do we chose to put him under anesthesia again to see if he is eating safe foods? Why are people verbally judging us as if we are overreacting to simple allergies, the only thing THEY can relate to? How can I help people understand! Finally, we found APFED! Ahhh, families who know exactly what we are going through...we are not on an island anymore! Networking with other families, having our children meet others just like them (that THEY also know that they are not alone), eating or accepting formula in the many creative ways our families have developed without being judged. After taking that breath of relief, to find through APFED the information that sheds light on the scope of this challenging condition. Doctors dedicated to this emotionally charged disease. Conferences to educate families directly from doctors determined to help our precious children and adults. Working together to put into place what others take for granted: ICD-9 codes, awareness about the condition (National Eosinophilic Awareness Week), money for research!!! In appreciation for all that APFED has offered us, a group of families came together to create a video for APFED specifically to help teachers, family and friends understand what we live day to day, in hopes that they will join us with compassionate support instead of judgment. But with many informational pieces such as newspaper articles, news briefs and magazine profiles, people watch, think how sad, and move on. Our goal at the end of the video was to ask viewers to stop, hear our children, and to think about giving to an amazing nonprofit that given so much to so many!
I've personally experienced the results of this organization in...
Education through the latest information, ICD-9 codes, National Eosinophil Awareness Week, fundraising for this orphan disease, grants for research, grants for families to attend conferences, and so much more.
How frequently have you been involved with the organization?
About every month
When was your last experience with this nonprofit?
Donor & Created the video, LIFE WITHOUT FOOD.