Remington Walls

$16,617 of $40k goal

Raised by 249 people in 22 days
Janeen Salzgeber  LAND O LAKES, FL
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.
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Stephanie Walls
20 days ago

Our family is so incredibly awed by your generosity. We have been moved to tears by your overwhelming support! This was a battle we were not able to carry or fight ourselves and so we thank you from the bottom of our hearts for your encouragement! Pride sometimes has a way of interfering when help is needed. Through your graciousness, we are humbled! We are just in the beginning stages of pursuing legislation that will hopefully mandate coverage however, this will be a long road to travel. We ask that you keep posting, tweeting, texting, chatting it up so together we can ALL make a difference! Thank you for your love, it's been an amazing inspiration to our family!

+ Read More
Penny McGu
17 days ago
4
4

Sorry, your family is dealing with this. Your friends and family need to take to Twitter and share your news story and make sure all your friends and family use the #AnthemBlueCrossBlueShield and #frontiercommunications. You need to get the insurance companies attention, I have seen this work before. Hashtagging your local lawmakers in the post is a good idea also. Good Luck

+ Read More
Jim Salzgeber
16 days ago
3
3

I'd like to challenge ALL HEALTH CARE PROFESSIONALS to contribute to this. Please keep sharing!

+ Read More
Lindsey Nichole Gricoski
18 days ago
3
3

I can only donate a small amount now but my next paycheck I will donate more!!

+ Read More
Kloee Cirasuolo
20 days ago
2
2

Everyone please donate! Anything counts❤

+ Read More
Jeremy Brant
22 days ago
2
2

I would recommend the family look into reimbursement programs such as these, if you haven't already: http://www.neocate.com/reimbursement/other-reimbursement-programs/

+ Read More
Janeen Salzgeber
20 days ago
1
1

IF YOU HAVE A TWITTER ACCOUNT!!! Please tweet this to the following: Gov Rick Scott Pam Bondi Justin Senior, Secretary at Florida's Agency for Health Care Administration Richard Corcoran Gus Bilirakis Marco Rubio On your mark, get set, GO!

+ Read More
Stephanie Walls
5 days ago

We wanted to give an update to our insurance battle. To clarify, our insurance company is NOT covering our son’s formula. Currently, we have a reprieve, because a private source has agreed to help pay for the formula for just the remainder of this year. Our family is once again speechless and so thankful by your outpouring of support! We believe that we are to be the voice for the voiceless in our pursuit to change legislation regarding elemental formula. We are not able to take this fight on alone and your generosity has helped us gain a much needed peace. Our mission as a family is to not allow any other family to suffer at the hands of big corporations any longer. There is no comparison for a dollar amount to ever be placed on a life. Every life is precious no matter the cost to insure. God has truly brought us to our knees so that we may glorify Him in this mission. When we felt completely helpless and hopeless, your generosity reinforced that we were on the right path. We have much to learn in terms of legislative efforts but again we have been blessed in the contacts that have been made so far. We are just an average American family and like most of you, we believe in God, hard work, integrity and speaking out against what is wrong. Please continue to share our story and most importantly pray.

+ Read More
Janeen Salzgeber
7 days ago

Weekend challenge: Skip the Mc! Prayerfully povide for Remington Walls by skipping your trip through McDonald's this weekend. Please see his story & donate at: http://allergicliving.com/2017/03/17/teen-with-eoe-allergy-denied-coverage-for-formula-his-only-nutrition-source/ be blessed by blessing others!

+ Read More
Adam DeLuca
9 days ago

I work for the company that makes your Splash. Please contact me so I can provide some additional resources that may help.

+ Read More
Janeen Salzgeber
22 days ago

Jeremy - Thanks so much for the suggestion. For some families the neocate.com is part of their solution. However, for Remington's family, they don't meet the requirements for this source of help. Every situation is different, so I really appreciate your suggestion of additional resources. Be Blessed!

+ Read More

$16,617 of $40k goal

Raised by 249 people in 22 days
Created March 3, 2017
TH
$100
Theresa & Chester Hewitt
1 day ago

Hoping the insurance companies will give you the relief you need.

DC
$10
deborah crocker
2 days ago

God bless you. You are amazing!

$20
Anonymous
2 days ago
KR
$25
Kristen Rackley
3 days ago
KW
$100
Kay Warren
5 days ago
1
1
MC
$100
Meghan Colleli
5 days ago
1
1

Theo is my nephew. I've been following your story through Sara. Praying this gets worked out!

GW
$50
GNC Westchase
5 days ago
1
1
NS
$100
Nancy Spears
6 days ago
1
1

I hope you can win this fight! My favorite book is John Grisham's "Rainmaker," about fighting an insurance company who has a secret policy to deny claims, knowing the customers will usually give up. Sending much love to you!

SR
$20
Shalini Roncato
7 days ago
1
1
MR
$20
Michele Rosenblum
7 days ago
1
1
Stephanie Walls
20 days ago

Our family is so incredibly awed by your generosity. We have been moved to tears by your overwhelming support! This was a battle we were not able to carry or fight ourselves and so we thank you from the bottom of our hearts for your encouragement! Pride sometimes has a way of interfering when help is needed. Through your graciousness, we are humbled! We are just in the beginning stages of pursuing legislation that will hopefully mandate coverage however, this will be a long road to travel. We ask that you keep posting, tweeting, texting, chatting it up so together we can ALL make a difference! Thank you for your love, it's been an amazing inspiration to our family!

+ Read More
Penny McGu
17 days ago
4
4

Sorry, your family is dealing with this. Your friends and family need to take to Twitter and share your news story and make sure all your friends and family use the #AnthemBlueCrossBlueShield and #frontiercommunications. You need to get the insurance companies attention, I have seen this work before. Hashtagging your local lawmakers in the post is a good idea also. Good Luck

+ Read More
Jim Salzgeber
16 days ago
3
3

I'd like to challenge ALL HEALTH CARE PROFESSIONALS to contribute to this. Please keep sharing!

+ Read More
Lindsey Nichole Gricoski
18 days ago
3
3

I can only donate a small amount now but my next paycheck I will donate more!!

+ Read More
Kloee Cirasuolo
20 days ago
2
2

Everyone please donate! Anything counts❤

+ Read More
Jeremy Brant
22 days ago
2
2

I would recommend the family look into reimbursement programs such as these, if you haven't already: http://www.neocate.com/reimbursement/other-reimbursement-programs/

+ Read More
Janeen Salzgeber
20 days ago
1
1

IF YOU HAVE A TWITTER ACCOUNT!!! Please tweet this to the following: Gov Rick Scott Pam Bondi Justin Senior, Secretary at Florida's Agency for Health Care Administration Richard Corcoran Gus Bilirakis Marco Rubio On your mark, get set, GO!

+ Read More
Stephanie Walls
5 days ago

We wanted to give an update to our insurance battle. To clarify, our insurance company is NOT covering our son’s formula. Currently, we have a reprieve, because a private source has agreed to help pay for the formula for just the remainder of this year. Our family is once again speechless and so thankful by your outpouring of support! We believe that we are to be the voice for the voiceless in our pursuit to change legislation regarding elemental formula. We are not able to take this fight on alone and your generosity has helped us gain a much needed peace. Our mission as a family is to not allow any other family to suffer at the hands of big corporations any longer. There is no comparison for a dollar amount to ever be placed on a life. Every life is precious no matter the cost to insure. God has truly brought us to our knees so that we may glorify Him in this mission. When we felt completely helpless and hopeless, your generosity reinforced that we were on the right path. We have much to learn in terms of legislative efforts but again we have been blessed in the contacts that have been made so far. We are just an average American family and like most of you, we believe in God, hard work, integrity and speaking out against what is wrong. Please continue to share our story and most importantly pray.

+ Read More
Janeen Salzgeber
7 days ago

Weekend challenge: Skip the Mc! Prayerfully povide for Remington Walls by skipping your trip through McDonald's this weekend. Please see his story & donate at: http://allergicliving.com/2017/03/17/teen-with-eoe-allergy-denied-coverage-for-formula-his-only-nutrition-source/ be blessed by blessing others!

+ Read More
Adam DeLuca
9 days ago

I work for the company that makes your Splash. Please contact me so I can provide some additional resources that may help.

+ Read More
Janeen Salzgeber
22 days ago

Jeremy - Thanks so much for the suggestion. For some families the neocate.com is part of their solution. However, for Remington's family, they don't meet the requirements for this source of help. Every situation is different, so I really appreciate your suggestion of additional resources. Be Blessed!

+ Read More
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