The manufacturers have agreed to provide the necessary formula components to sustain Mack. This outcome secures the immediate medical stability he requires for his recovery. We are shifting our focus now to monitoring his transition to caloric intake from real food.
April 8, 2014
Final supporters
UPDATE:
Abbott makers of Elecare formula would not work collaboratively with us or Mack's doctors to find and establish safe food. We could not wait for their medical board to be honest with the situation at hand and value Mack's worth. We have been able to find a module formula to sustain life for Mack until we can get his body to tolerate real food? Thank you all very much for your time and thoughts as we went through this process.
Mack suffers from two rare food allergies one is called FPIES (Food Protein Induced Entercolotis Syndrome), as quoted on “The FPIES Foundation” Classic symptoms of FPIES include profound vomiting, diarrhea, and dehydration. These symptoms can lead to severe lethargy, change in body temperature and blood pressure, which in short is a severe gastrointestinal allergy that makes it so that the body could have severe and life threatening reaction to food and other triggers. The second is called EoE (Eosinophilic Esophagitis), As quoted on the Cured Foundation, which causes the body to have an allergic reaction in the esophagus with symptoms that may include pain, swelling, skin rash, hives, reflux, choking, difficulty swallowing, nausea, vomiting, loss of appetite, stools containing blood and/or mucus, abdominal cramping, diarrhea, fever, esophageal rings, motility problems, bowel obstruction, bowel or stomach wall thickening. Both of these ailments when highly active reactive require a special amino acid formula as part of their treatment. Mack is on the rarer end of this already complex combination that makes it so that they cannot tolerate more than a couple foods. He relies on the nutrition of a specific medical food called Elecare Jr. Vanilla Flavored
Unfortunately, the company has made many changes to the product, and as a result Mack health has been deteriorating, trialing foods for the past year before running out of his stock. He cannot handle even the slightest change in the formulas, and Abbott, the company that makes Elecare, has been no help to the family. Elecare has even denied any changes to this medical food, despite the label ingredients being different. So Elecare has left this child without any safe food to survive.
Mack's family has collected all the formula of the old recipe that they could. He is now living off of expired food per doctors orders, in hopes that this will prolong his life. The family has been trying since last year and all other formulas have been exhausted. He has no other options or choices at this moment with two safe foods this formula was and is his “Sole Nutrition”. If he does not get the old recipe back, he will not be able to function as a normal child and his quality of life will be affected, gravely.
Mack just turned 5, and is the joy and spunk in his family. He has people who love him, and will fight until the end to give him a chance at life, and that means getting Elecare to make him safe formula. Mack needs our help. He needs voices, and needs people to fight with him. No child should be robbed of life in a world surrounded by food because a big company wanted to save a buck or two to have a holiday bonus. No parent should have to live each day knowing that their child will no longer exist because no one cared.
This child is young and small, but fierce and needs our help to advocate for him. His parent's need your support to get their child his safe food back. Imagine if this were your child, would you just sit there and let your child no longer exist? Would you let your child suffer, because someone robbed them of their right to “safe food”? Safe “medical food” prescribed by a doctor to keep your child alive, being changed without the doctors’ consent.
How to help:
Sign this petiton, and share it with your friends on facebook, instagram, twitter, and email.
Contact Abbott:
Abbott Nutrition
100 South Saunders Road
Lake Forest, IL 60045
Telephone: (800) 551-5838(800) 551-5838(800) 551-5838(800) 551-5838
https://svcs.abbott.com/abtcontactus/contact.do?
Contact your states senators and representatives:
http://www.senate.gov/general/contact_information/senators_cfm.cfm
Contact the FDA:
Website: Center for Food Safety and Applied Nutrition
Contact via the Web: Contact the Center for Food Safety and Applied Nutrition
E-mail: [email protected]
Address:
5100 Paint Branch Parkway
College Park,
MD
20740-3835
Toll-free: (888) 723-3366(888) 723-3366(888) 723-3366(888) 723-3366
TTY: (800) 877-8339(800) 877-8339(800) 877-8339
Read and share Mack's Blog:
http://macksfpiesjourney.blogspot.com/
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Updates
March 2, 2014
I have finalized the formal request for an emergency review of these formula protocols. Legal counsel is now drafting a secondary communication to address the lack of direct engagement from their medical board.
Reached 100 supporters
March 2, 2014
68 Comments
Our daughter has fpies and potentially an eosinophilic disorder too. She can't even tolerate the elemenal formulas and doesn't have a single safe food, so we understand the desperation this family must be feeling.We hope Abbott do the decent thing and provide the old formulation for Mack.
Please continue to help Mac and all the other like him. My grandson also has FPIES and his expensive formula is his only source of nutrition. Without this life saving formula my brave sweet grandson could not tolerate food so please help Mac, Cohen and all the others who without assistance would not survive.
If you really want to updaye your product why dont you continue your previous product. Please understand the gravity of the situation. These are not simple formulas. It is life and death issues for people like us.
Keep Fighting!! There IS still such a thing called Sanctity of Life; people just need to be reminded sometimes. There are many children and families who are going through the same thing. One child is too many! Please stand with Mack, his parents, and other families going through this. The company made the formula before; they can do it again. Why refuse the one thing that saves these children's lives when it's in your power?
I too have three children with food protein induced enterocolitis and other gastrointestinal symptoms, immune deficiency , and other neurological symptoms. My youngest requires neonate and elemental formula to survive. With amino acid formula in their purest forms some children merely cannot tolerate simple formulary changes and have few or no safenfoods. No parent should feel as if hey have no food to feed their child. Please help children like Mack and my sonJaxon fight this rare disorder.
I'm so sorry for your baby!! I pray you get the secret formula :)
There needs to be more awareness for this condition!
Share this petition
Share this petition to help it reach more people.
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The manufacturers have agreed to provide the necessary formula components to sustain Mack. This outcome secures the immediate medical stability he requires for his recovery. We are shifting our focus now to monitoring his transition to caloric intake from real food.
April 8, 2014
Final supporters
UPDATE:
Abbott makers of Elecare formula would not work collaboratively with us or Mack's doctors to find and establish safe food. We could not wait for their medical board to be honest with the situation at hand and value Mack's worth. We have been able to find a module formula to sustain life for Mack until we can get his body to tolerate real food? Thank you all very much for your time and thoughts as we went through this process.
Mack suffers from two rare food allergies one is called FPIES (Food Protein Induced Entercolotis Syndrome), as quoted on “The FPIES Foundation” Classic symptoms of FPIES include profound vomiting, diarrhea, and dehydration. These symptoms can lead to severe lethargy, change in body temperature and blood pressure, which in short is a severe gastrointestinal allergy that makes it so that the body could have severe and life threatening reaction to food and other triggers. The second is called EoE (Eosinophilic Esophagitis), As quoted on the Cured Foundation, which causes the body to have an allergic reaction in the esophagus with symptoms that may include pain, swelling, skin rash, hives, reflux, choking, difficulty swallowing, nausea, vomiting, loss of appetite, stools containing blood and/or mucus, abdominal cramping, diarrhea, fever, esophageal rings, motility problems, bowel obstruction, bowel or stomach wall thickening. Both of these ailments when highly active reactive require a special amino acid formula as part of their treatment. Mack is on the rarer end of this already complex combination that makes it so that they cannot tolerate more than a couple foods. He relies on the nutrition of a specific medical food called Elecare Jr. Vanilla Flavored
Unfortunately, the company has made many changes to the product, and as a result Mack health has been deteriorating, trialing foods for the past year before running out of his stock. He cannot handle even the slightest change in the formulas, and Abbott, the company that makes Elecare, has been no help to the family. Elecare has even denied any changes to this medical food, despite the label ingredients being different. So Elecare has left this child without any safe food to survive.
Mack's family has collected all the formula of the old recipe that they could. He is now living off of expired food per doctors orders, in hopes that this will prolong his life. The family has been trying since last year and all other formulas have been exhausted. He has no other options or choices at this moment with two safe foods this formula was and is his “Sole Nutrition”. If he does not get the old recipe back, he will not be able to function as a normal child and his quality of life will be affected, gravely.
Mack just turned 5, and is the joy and spunk in his family. He has people who love him, and will fight until the end to give him a chance at life, and that means getting Elecare to make him safe formula. Mack needs our help. He needs voices, and needs people to fight with him. No child should be robbed of life in a world surrounded by food because a big company wanted to save a buck or two to have a holiday bonus. No parent should have to live each day knowing that their child will no longer exist because no one cared.
This child is young and small, but fierce and needs our help to advocate for him. His parent's need your support to get their child his safe food back. Imagine if this were your child, would you just sit there and let your child no longer exist? Would you let your child suffer, because someone robbed them of their right to “safe food”? Safe “medical food” prescribed by a doctor to keep your child alive, being changed without the doctors’ consent.
How to help:
Sign this petiton, and share it with your friends on facebook, instagram, twitter, and email.
Contact Abbott:
Abbott Nutrition
100 South Saunders Road
Lake Forest, IL 60045
Telephone: (800) 551-5838(800) 551-5838(800) 551-5838(800) 551-5838
https://svcs.abbott.com/abtcontactus/contact.do?
Contact your states senators and representatives:
http://www.senate.gov/general/contact_information/senators_cfm.cfm
Contact the FDA:
Website: Center for Food Safety and Applied Nutrition
Contact via the Web: Contact the Center for Food Safety and Applied Nutrition
E-mail: [email protected]
Address:
5100 Paint Branch Parkway
College Park,
MD
20740-3835
Toll-free: (888) 723-3366(888) 723-3366(888) 723-3366(888) 723-3366
TTY: (800) 877-8339(800) 877-8339(800) 877-8339
Read and share Mack's Blog:
http://macksfpiesjourney.blogspot.com/
Call
Send SMS
Add to Skype
You'll need Skype CreditFree via Skype
Call
Send SMS
Add to Skype
You'll need Skype CreditFree via Skype
Call
Send SMS
Add to Skype
You'll need Skype CreditFree via Skype
Updates
March 2, 2014
I have finalized the formal request for an emergency review of these formula protocols. Legal counsel is now drafting a secondary communication to address the lack of direct engagement from their medical board.
Reached 100 supporters
March 2, 2014
68 Comments
I am sorry to hear this. Our 5-year-old son is also surviving on an expired formula, Neocate One+. Praying that Abbott will listen and manufacture Mack's safe food again.
Our daughter has fpies and potentially an eosinophilic disorder too. She can't even tolerate the elemenal formulas and doesn't have a single safe food, so we understand the desperation this family must be feeling.We hope Abbott do the decent thing and provide the old formulation for Mack.
Please continue to help Mac and all the other like him. My grandson also has FPIES and his expensive formula is his only source of nutrition. Without this life saving formula my brave sweet grandson could not tolerate food so please help Mac, Cohen and all the others who without assistance would not survive.
If you really want to updaye your product why dont you continue your previous product. Please understand the gravity of the situation. These are not simple formulas. It is life and death issues for people like us.
Keep Fighting!! There IS still such a thing called Sanctity of Life; people just need to be reminded sometimes. There are many children and families who are going through the same thing. One child is too many! Please stand with Mack, his parents, and other families going through this. The company made the formula before; they can do it again. Why refuse the one thing that saves these children's lives when it's in your power?
I too have three children with food protein induced enterocolitis and other gastrointestinal symptoms, immune deficiency , and other neurological symptoms. My youngest requires neonate and elemental formula to survive. With amino acid formula in their purest forms some children merely cannot tolerate simple formulary changes and have few or no safenfoods. No parent should feel as if hey have no food to feed their child. Please help children like Mack and my sonJaxon fight this rare disorder.
I'm so sorry for your baby!! I pray you get the secret formula :)
There needs to be more awareness for this condition!
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I am sorry to hear this. Our 5-year-old son is also surviving on an expired formula, Neocate One+. Praying that Abbott will listen and manufacture Mack's safe food again.