Remington Walls

Think about what you had for breakfast, lunch and dinner today? Has there ever been a time when all you could eat would be a single flavor medically prescribed drink to sustain your life? I think most of us would say no. Remington Walls would say yes. Every single meal or snack, of every single day for the last 13 years he has had the same drink. He has been diagnosed with a rare disease called Eosinophilic Esophagitis (EoE) in which he is allergic to all foods. His reality is that he cannot eat any food other than this single flavored “amino acid elemental formula”. Over the 13 years since his diagnosis, the family has tried food trials, all with the same result…Remington will vomit, cough, gag and experience pain till the point where he has to be hospitalized. Remington has lived this life since he was 4, taking his prescribed drink every 2 hours.
Imagine how this would change your everyday life. How would Thanksgiving dinner, Christmas dinner, Sunday brunches, a spontaneous stop at McDonald’s drive-through or a shopping trip, (without planning ahead, making sure you have enough nutrition packed and chilled with you to allow for that). I write all this not for any pity for this family because that is the last thing they would want for them or their son. They have exhibited such determination and strength as a family to make a difference for others affected with this same disorder along the way.
Mike & Stephanie, Remington’s parents, have brought Rem up to look beyond the obstacles in his life and persevere to live normal in a not so normal reality. His focus has been playing baseball, preparing himself for college and working part time at Publix. But normal stops at food. Rarely will you find the family dining out or making a fast food run. Food is not the focus with this family because they realize there is much more to life than that now.
In spite of coping with this disease and managing all of the medical expense they encounter with their trips to Cincinnati Children’s Hospital Eosinophilic Clinic, the Walls have been able to financially take Remington’s condition on themselves, with the help of insurance coverage. Up until now.
The reason for this post:
This year, however, the insurance company is no longer covering Remington’s formula. After 12 years the coverage is no longer available. Of course, Stephanie and Mike are continuing to present their case to change that ruling by the insurance company and to now work on changing legislation that would mandate insurance companies cover life sustaining elemental formula for all that need it. However, in the meantime, Remington’s nutrition remains uncovered by any insurance. You might be thinking – how much could a little juice box cost? The estimated costs for Remington’s only source of sustenance is $2,500.00 a month through a home health care provider or $1,900.00 if ordered directly from the manufacturer. For most Americans that is a mortgage payment. That’s a hefty price tag over the course of a year.
As a family, they did not want to start a “Go Fund Me” project. However, as their friends, we can see this family is trying to cope with a financial hardship that will not be sustainable.
As their friends, we are asking if you would pledge whatever you are able to help the Walls cover a very “not so normal” expense. If you can’t financially support this project, please pray for provision and help us spread the word- share Rem’s story, post it, tweet it, text it. The family is working on trying to change the legislation to mandate such coverage of elemental formula for all. If you are interested in helping with the legislation efforts we ask that you pray for guidance, encouragement and determination as they proceed down this path. To learn more about eosinophilic disorders, please visit HYPERLINK "http://www.apfed.org" www.apfed.org. You can see Remington’s story on HYPERLINK "http://www.apfed.org" www.apfed.org, click on resources, then on patient stories and scroll to the bottom. Thank you and God Bless.

Donations

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  • Terri Anello 
    • $20 
    • 22 mos
  • Brielle Davidson 
    • $10 
    • 33 mos
  • Kathy Ryals 
    • $50 
    • 36 mos
  • Gisele michaud 
    • $50 
    • 41 mos
  • Michelle Spreadbury 
    • $10 
    • 42 mos
See all

Organizer and beneficiary

Janeen Salzgeber 
Organizer
Land O Lakes, FL
Stephanie Walls 
Beneficiary
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