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john28

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APFED
June 23, 2010

Our son, has been battling Eosinophilic Disorder since he was born. Initially, we eliminated milk and soy from his diet, but he was still very symptomatic. After countless endoscopies and eliminating a few foods here and there, we reached a very difficult point in December of 2008. We needed to eliminate all foods, forcing him to receive all of his nutrients through a feeding tube. At first, he had a nasogastric (NG) feeding tube. After a few months, it was evident that a feeding tube was going to be a long-term situation. He had a G- tube surgically implanted through his stomach for his 8th birthday in March 2009. Even though or doctors explained everything to us, we still had questions and concerns. We had heard of APFED from them, and looked to the organization for help. From the videos, to the online brochures to the message boards, we were able to get answers those questions we had forgotten to ask or didn't even think of. It was through APFED that we learned of a genetic marker that is linked to EE. So when our daughter started to present symptoms of Eosinophilic Disorders, we knew the path we had to take. APFED has proven to be a most valuable asset to our family in dealing with the day to day trials of this disease, as well as the long term issues we have been struggling with.

The Great!

I've personally experienced the results of this organization in...

getting support and information about this difficult disorder. APFED has become a valuable asset in helping our family cope with EE and helping us educate family and friends about the disease.

More feedback

What I've enjoyed the most about my experience with this nonprofit is...

the support of all of the other families. It is a great group of people all helping each other out to find their way through this challenging disease.

The kinds of staff and volunteers that I met were...

fantastic. I have had the opportunity to work with the fundraising team and they have been amazingly supportive and helpful in helping us organize and have many successful fund raisers.

If this organization had 10 million bucks, it could...

bring this disease further into the spotlight and get many more people educated about the disease. It would also be able to help fund much needed research to help with the battle against EE/EGID.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

MY ROLE:
General Member of the Public & My family has gotten support from APFED and we have raised money to help their efforts.