We need your help. I am sending this email out to raise awareness of a tragic, chronic, and lifelong disease we are facing with our 3 year old son, Joshua. A little over one year ago, Josh was diagnosed with Eosinophilic GastroIntestinal Disease (EGID), a very rare immune system disease. The short explanation is that we all have eosinophils in our body whose job is to attack parasites.
In Josh's body, they attack all food as if it's a parasite. As you might imagine, there are a number of complications that come from having your esophagus, stomach and intestines in a perpetual war zone, of sorts. Josh was placed on a naso-gastric feeding tube July 28th. We have removed all food from his diet since then and he has been sustained by a formula that essentially breaks food down to the amino acid level so the body doesn't recognize it as food.
Due to the complexities of this disease, we have transferred his care to a specialist in Denver who is one of only a handful of experts on EGID nationwide. We are returning there November 6th for the next surgery and to evaluate whether our 18 month old son, Timothy, who is exhibiting all the same symptoms, also has the disease. (Many of you have asked how we are doing and we do have a blog here.)
Why am I telling everyone I can about this?
Because we are fighting back at this misunderstood and mis-diagnosed disease, and we need your help. There has been less than $2,000,000 raised in the past 5 years by the two main foundations focusing on this disease. Because that is not nearly enough, we have decided to establish the Gardner Family Foundation (www.gardnerfoundation.org), a 501c3 whose focus is to raise $15,000,000 in the next two years to combat EGID. With these funds we will profoundly change the understanding and course of treatment of EGID.
The Foundation is focusing on four critical areas.
1. Raising awareness of this disease in the public realm. (We are planning local fundraisers, significant publicity and PR and a large Celebrity Fundraiser the 1st Quarter of 2009.)
2. We will educate the Pediatricians, Pathologists and Pediatric GI specialists around the country. (This will occur at conventions, medical schools, and association events.)
These first two areas are important because the typical diagnosis time is 3-4 years. The first Pediatric GI Specialist we met with when Josh was throwing up 10-12 times per day told us "He'll learn to swallow his vomit." That Dr. is not a bad person, just wildly uninformed about this disease (and obviously did not treat our child further after that comment.) We need the Doctors and the parents both to be more educated on what the symptoms are and how to diagnose it , or we will not significantly decrease that 3-4 year diagnosis time. And that is way too long for these kids to needlessly suffer with this disease.
3. Research is critical to better understanding this disease as well as changing the course of treatment including drug studies and diagnosis options. (Treatment currently requires a surgical procedure every 3 months which is very invasive and painful for the patient).
4. We will help provide financial relief for the families going through this lifelong, chronic disease. The typical family is faced with annual bills that could total anywhere from $10,000-40,000 per year. A vast majority of families simply can't afford that. And as emotionally taxing as this disease is on a family, when you add financial pressure it can be enough to break families apart, which is the last thing anyone needs to go through when being faced with these types of challenges.
What am I asking you to do? There are really five things we need your help with:
1. Ideas on how to creatively raise funds for this non-profit.
2. Connections to anyone you know that could be interested in getting involved in any way, shape or form.
3. Donations to our foundation. (Please visit www.gardnerfoundation.org) Many speakers have offered to donate a percentage of their fee on dates that FIVE STAR books, give us a speech or the like. If everyone who receives this email simply gave $5, we would be able to fund several grants and would make a big difference.
4. Forward this email to as many people as you can in your database.
5. Prayers for us as we go through this are of utmost importance. We can not overestimate the importance of having people around the world praying for Josh. It really does make a difference.
For any other ideas or connections, please contact Steve Gardner.
My family has been so richly blessed through this entire ordeal by our community of speakers. Much has been accomplished already, but there is a far greater challenge ahead of us. I am hopeful that you will join with us in this fight as we seek to make a profound difference in the lives of thousands of kids and adults suffering with this disease.
Steve Gardner, Father, Husband
P.S. Please check out www.gardnerfoundation.org for continued progress on our mission of fighting Eosinophilic Diseases.