We are reaching out to all of you to ask for some critical yet simple help with our son’s health. In case you don’t already know, Silas has struggled with major health issues since birth. After almost four years of seeing doctor after doctor (both medicinal and naturopath docs) who could not figure out his problem, we were finally able to find help in March of this year. It took us traveling to The Center for Eosinophilic Disorders in Cincinnati, Ohio to run extensive tests to find that he has a newly discovered disease called Eosinophilic Esophagitis (EE for short). As of now, they tell us that there is no cure for this condition—only remission.
To keep it simple, Sy has an allergic reaction to all food. This reaction creates a multitude of white blood cells (eosinophils) in his upper and lower esophagus that cause much damage and swelling. Sy’s case is severe enough that he will eventually need a feeding tube. Our recent care from Cincinnati Children’s Hospital (and Heather’s hard work and research) has kept us from reaching that point so far. As of now, doctors are keeping Sy on a single source of nutrition (elemental formula) and have eliminated all foods in order to start at ground zero. It has been painful for us to remove all food from Sy’s diet, but God has performed another miracle in giving him the best attitude of anyone out there (adults included). Somehow, he deeply understands and trusts that we are trying to improve his condition.
Up until now, we have kept our struggles relatively to ourselves but we have finally reached a point where we must ask for help to continue to get our boy the care he needs. Through God’s creative handiwork, most of last year’s treatment and $15,000+ of testing and treatment was covered at 100% because we had already reached our insurance out- of-pocket maximum earlier in the year (from previous doctor visits, of course). However in April, our deductible started over. Through all the financial upheaval we have been through, God has continued to provide open doors for Silas to continue his treatment. Due to the major pay cut we took last year, we were able to get Sy approved for Florida Medicaid and they are playing a role in paying for his continued treatment; however, there are still many costs that are not covered. We are currently battling with Medicaid to get Sy’s formula and his treatment in Cincinnati covered (since it is out of state—even though no doctor/hospital in Florida can handle Sy’s case). His formula alone costs $27.50 per day (about $825 per month).
On top of these expenses, starting in September, we are supposed to start visits to Cincinnati Children’s Hospital every 6 weeks to perform follow up endoscopies (throat camera surgeries) and hopefully get Sy back on the path to eating solid food one at a time. As of right now, we have no way of making the first visit happen, so the total food elimination diet would be a waste and the EE will continue to progress. These trips only take 1-2 days, but on top of the medical expenses, there is still the airfare for one of us to take him, car rental, and lodging to incur. There have been people that God has used in ways we can’t describe to get us this far, but we feel that we must now start planning for the long road ahead.
So, why are we blogging all of this?
We need you to help us brainstorm to find ways to cover the costs of Sy’s future treatments through a large of amount of creativity and fun! We are considering future fundraising events, community awareness/research support of EE, partnering with our team of doctors in Cincinnati, donations of travel rewards/skymiles/car rentals, and many more ideas. Here’s a quick brainstorm:
1. The obvious first one is Sy’s love of bowling. This kid’s hardcore bowling obsession is definitely enough to eliminate this disease! Sy has met Norm Duke (World Champion Bowler) who happens to live in our town and we would love to maybe get him and our local bowling alley involved for a local fundraising event. We would need many hands to get this off the ground and make this successful.
2. We have also considered the idea of selling some simple and inexpensive accessory product to help raise awareness and cover our costs (bracelets, t-shirts, whatever). Any fun ideas?
3. We are looking at contacting several local news stations/newspapers to pitch Sy’s story (The Boy Who Can’t Eat Food) and his great attitude. There have been a few stories like this in the country, but none that we’ve found in the southeast. Does anyone have any contacts or experience with this?
4. Maybe you have a profession or hobby that could help get the word out or hold a benefit event (i.e. dinner, 5K/10K road race, etc.)?
There are many more ideas out there and nothing is too crazy for us to consider! Send us whatever ideas you have or possible contacts to raise awareness or funds. And please, SPREAD THE WORD!!
We’ve really tried to keep this short and to the point, but there’s so much important information to get out. Thanks for taking the time to read this and give it some thought. It means more than you realize (especially to our Sy Sy).
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