Full Donor List
FPIES United Family Fund and the CHOP Food Allergy Center
Food Protein-Induced Enterocolitis Syndrome(FPIES) is a condition that affects infants and young children. Current research is needed, as many children over the age of 5 are still affected by FPIES as well. FPIES is a non-IgE allergy. The symptoms of this type of allergic reaction are delayed and include repetitive vomiting that may not start for a few hours following ingestion of the food to which the child is allergic. Even trace amounts can trigger a reaction. There is often diarrhea filled with blood, mucous and undigested foods that starts later. In some cases, the reaction includes hypotension and lethargy. Occasionally, the child becomes so severely dehydrated from uncontrollable vomiting and diarrhea that they run the risk of shock. The treatment is symptomatic and can include hospitalization for IV fluids and steroids. The latter is given because the pathophysiology is that of a T-cell response.
Established in September, 2010, the FPIES United Family Fund is the first and only grassroots research fund for FPIES worldwide. Many families, across the globe have traveled to CHOP in search of a diagnosis and treatment plan for their FPIES child. Together, these families have supported CHOP and this fund, by hosting benefits and events to create new funding for FPIES research. Currently, the FPIES United Family Fund is please to become a funding resource for FPIES research in the newly developing Food Allergy Center at CHOP. The Food Allergy Center has developed very ambitious goals and hopes to prevent, and one day eradicate, all food allergies and their accompanying life-threatening dangers and lifestyle hardships that affect a dramatically increasing population of allergy patients. The mission of the Food Allergy Center is to be the leader in recognizing, managing and treating the full spectrum of food allergies through groundbreaking research, full use of CHOP's operational expertise and resources, and passion for improving children's lives with optimal, personalized patient care. The FPIES United Family Fund will continue to raise funds, in addition to numerous funding sources, for FPIES research through CHOP's Food Allergy Center. The Fund hopes that by raising funds for research, an understanding of the pathophysiology and improved treatment of FPIES will be developed. Ultimately, we wish to find the cause and cure to FPIES.
Please help to make change in the lives of a FPIES patient and family, and to help the wonderful physicians at CHOP to find the cause and the cure for FPIES by making a donation to this fund. Hope Lives Here!
How to Donate
Donations may be made to this site or may be mailed to:
CHOP Foundation
Attention:FPIES UNITED FAMILY FUND
Lock box #1352
PO Box 8500
Philadelphia, PA 19178-1352
**PLEASE BE SURE TO SPECIFY FPIES UNITED FAMILY FUND ON YOUR ENVELOPE AND CHECK**
CHOP's Development Center is here to help! If you would like to host an event, make a corporate donation or fundraise, please contact the Community Fund raising Team at 267-426-6496.
*There are no administrative costs taken from any donations made. All funds collected will be funneled directly to FPIES research studies.
FPIES Family Connection
"After 19 months of searching for a diagnosis for our now two year old son, we took the trip to CHOP, where he was diagnosed within minutes by Dr. Terri Brown-Whitehorn with FPIES. It was a bittersweet moment for us; we learned FPIES is a rare, under-diagnosed, under-recognized non-IgE allergy. Since then, our son's quality of life has improved greatly; his physicians have knowledge, compassion and empathy and they understand our journey. They have never shied away from any questions or concerns we have, which has taken a great deal of stress away from our family."
Fallon and Christopher Schultz
"FPIES rocked our world in ways we could not imagine. One day everything is normal and then in the blink of an eye you are scared to feed your child. A seemingly harmless food that is supposed to nourish him and help him grow can now be the enemy. As a mother it breaks your heart when trying to feed your child knowing that you could be making him very ill. FPIES impacts your every waking moment and consumes you. My prayers will be answered when the medical community recognizes this condition and families will no longer have to fight for a diagnosis. " Jen Logue
"Our little ones are the heroes that carry more than most ever could bear... and we have the honor of being their voice until theirs are heard..." Katie Kanuchok
"I believe that in part, a mother’s created purpose is to nourish her children. For 19 months, FPIES has robbed me of this joy and in its place has left fear, uncertainty, and a sense of heartbreak. Each time I have to tell my twins “no” or “danger” as they watch other children eating or snacking, something inside of me grows stronger both the will and desire to find answers and healing and a deep resentment toward food itself." Nichole Gatten, mother to FPIES twins
Your donations will help to support change for a FPIES family. Research of this rare condition is desperately needed. Please consider making a monetary donation to this fund. Every dollar is a step closer to a cure.
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Records 1 - 25 of 44 |
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Lisa Davis
Tue, Feb 07, 2012
Hi there,
Thank you for all you do! We've been struggling with FPIES since 2008 when our oldest was 18 months old. He started having classic FPIES vomiting a little later than most but always had a sensitive stomach since birth. Now he is 5 and still gets severe FPIES reactions, mostly from accidental trace amounts of cross contamination. He reacts to oats, rice, soy, chicken, and cashews (and there is a whole host of other foods that I am still too scared to have him try). We want to stay involved and be a part of this movement to get the word out about FPIES. Let us know what we can do from the Southwest region of the USA! Email me at leaningtoweroflisa@gmail.com. |
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Erin
Fri, Feb 03, 2012
I am a mother of 2 girls with FPIES. My oldest who is 5 1/2 has finally outgrown most of it, but my 2 1/2 year old can still hardly eat anything. It has just become a way of life for us, and my little 2 1/2 year old is such a trooper! We are pregnant with our 3rd baby and I find myself feeling very anxious about going through this again. Both of my girls were extremely difficult babies from week 1 til they were about 1. I am however, very grateful to be armed with so much more knowledge this go around if we end up having to go through this again. But you can bet I will be scared to eat anything while I am nursing and will be frightened to ever give my baby a new food!
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Danielle
Thu, Sep 08, 2011
My daughter was diagnosed with FPIES when she was about 6 months old.She is one tomorrow! It took a couple of months before we got a diagnosis. She was refered to a GI doctor who did nothing except to come back when she was a year old. I pushed further with my pediatrician who was so helpful she called an allergist told him what my daughters syptoms were and he knew right away what it was. I live with the fear of her accidentally eating the trigger food. I have a 3 year old who can eat anything so making sure he eats away from his sister and not share with her is a big concern of mine. Now that she is turning one I don't know what I can feed her. I know she cant live off of baby food fruit until she grows out of this. Her 2 main foods that i know of that causes the vomiting reactions is Rice and Oat. Alot of other foods the doctor says to stay away from because it can be a potential trigger. If anyone has some advice for me or food suggestions for my little one I would greatly appreciate it. You can email me at md_lyons@msn.com Thanks.
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Kris
Fri, Jul 08, 2011
Good luck!
For years I have had reactions to eating food and no doctor has yet been able to help or diagnose me. Mine are not as severe as the children, since mine started as an adult, after menopause (and still being accused of being in menopause at the age of 63+, when I had a hysterectomy at age 34). My symptoms are to break out in a seen sweat, and/or be so totally hot I feel like I am burning up a building on fire. Anybody reads this, and has ideas to help me can write to leahgeorge8847@yahoo.com Kris Bedalov 414-255-8554 |
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Amber Harkins
Tue, Jul 05, 2011
My 3.5 month old daughter has had classic FPIES reactions to dairy based formula. Tomorrow I will be calling her pediatrician to hopefully get a referral to an allergist and get some direction for the future as my daughter gets older and we start introducing foods. It's terrifying knowing what might lie ahead. But I'm so thankful to have found numerous moms online that are offering support through forums and blogs. I've started a blog as well (not solely devouted to FPIES) at http://ramblingmute.blogspot.com
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jen hargreaves
Tue, Jun 21, 2011
Mother of Evan 2 1/2 fpies to dairy soy oats peaches rice among others. I am truly grateful for this page and the awareness with it.<3 you are all family to us. May God give us strength to overcome the fear that fpies comes with. I also pray for healing and comfort.603-235-8899 call me anytime mommies we are in this together.
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Rosalie Landis
Thu, Jun 09, 2011
Thank you. I finally feel like I am not the crazy person that I see reflected in everyone's eyes when I talk about my son's FPIES. My Joshua is 9 months old, in the 3rd percentile for weight, and facing an upcoming scope (that I don't feel he needs but they just have to 'rule everything out'), and later another food trial that has to be done in the hospital so he doesn't go into shock again. I have felt very alone, but am so encouraged by your website. Again, all I can say is 'thank you'.
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Theresa (Tre) Haws
Thu, Jun 02, 2011
My son, Mikhail is currently 20 months old. Mikhail and I have been struggling with his health since day one but it became extreme around 3 1/3 months old. Went through many hospitalizations, ER visits, office visits with no answers - except I am just a stressed out single mom! The nights of him rolling around screaming in pain and hitting me cause he hurt so bad are still vivid in my head. There would be weeks we were in the DR or ER every day and sometimes more than once a day. It was heartbreaking, I cried all the time and felt so hopeless and out of control. Finally when he was 9 months old I demanded to be referred somewhere else. By luck (because other hospitals didn't want the case) we ended up at the Mayo Clinic in Rochester, MN. Mikhail was put through extensive testing and surgeries. He was diagnosed with FPIES and severe allergies to Milk, Dairy, Eggs, Peanuts, Treenuts, Soy, Soybean, Beef, Lamb, Chicken, Pork, Rice. It warms my heart to know that someone out there believes us and is attempting to do something about it! THANK YOU SO VERY MUCH! My prayers and thoughts to all the children and parents living with FPIES!
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Anita Lizzi
Mon, May 30, 2011
My son is 7months old and has been vomiting after eating for 2months now. I have done research and beleive that he is showing signs of FPIES. (The only symptom he is missing is extreme diarrhea). Our doctor is not aware of FPIES so we are being sent thru the unending rounds of testing. My poor baby... We have an appointment to delineate his upper GI this week. I think our doctor wants to rule everything out before actually diagnosing him. I am TERRIFIED of what having FPIES means for my son & how my family and I will be able to cope with this diagnosis. Just to find 1 food that doens't make my son sick, would be a miracle. How do you teach a baby to eat solid food when all solid food makes them vomit? I have a feeling we have a battle laying before us...
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Jane
Sun, May 15, 2011
It wasn't until my son was 2 and 1/2 that I realized this is what he had. It has been a nightmare. Explaining this to his daycare is insane - people don't get it. He is now 2 months past three and his diet has been limited to white bread, cheese and yogurt. I also make lentil soup and put it in his ketchup to make sure he's getting protein (we're vegetarians). I fed him a bowl of cheerios when he turned three thinking it was safe. It was horrible. He did the typical reaction but it didn't occur the normal 2 hours after eating - instead it was 5 hours of pain and then the vomiting started. He was gasping for breath all through the night. We did bring him to the emergency room & the drs office the next day but of course no one had heard of it - in fact the dr rolled his eyes. Tomorrow we go to a gastroenterologist. We're cautiously optimistic. he's hoping we can figure this out so he can either avoid foods as needed or understand how to deal with the reactions.
I know Children's Hospital of Philadelphia is researching - please support. We need this help... |
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Rachel
Thu, Apr 28, 2011
My five year old was diagnosed with FPIES when she was 18 months old. I am still completely terrified of food, but she seems to have a pretty good attitude. She will tell my husband and I how to eat our food, and asks to smell it, but doesn't ask to taste because she remembers how much it hurts to have a reaction. She doesn't exactly like her Neocate Splash, but will drink it anyway, and eats vegetables that other children would run away from. We are still hoping this will get easier, but for now the kitchen is a strictly regulated room.
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Mom4W5
Tue, Dec 07, 2010
I have been so blessed to find this community of families who are searching for answers for our little treasures. We are adopting our youngest who has been diagnosed with FPIES. It has been frustrating and scary to try new foods for him. It is wonderful, though to know that we are not alone in this quest to research and "cure" this ailment.
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Danielle Collins
Fri, Oct 22, 2010
Thank you for starting a foundation, as you well know everytime we hit the er we have to explain to the woman at the desk for intake what is happening to our daughter, so frustrating because they do not understand the severity of her allergy. I pray everyday for answers, Im so fearful as I am sure many other parents are as well, I have even installed video cameras in our daughters room, scariest thing ever, so powerless, thank you for all that you are doing.
The Vice Family |
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Fallon Schultz
Thu, Oct 21, 2010
Just want to send a big thank you to all of those working hard to help raise awareness and funding for FPIES. We have so much to do, but the fund has had a great start. I am honored to be a part of this community and will continue diligently work to make a difference in the quality of life of the children and families affected by FPIES ;) Thank you from the bottom of my heart! ;)
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Denise Bard
Wed, Oct 13, 2010
What a great thing to have!! ALthough we are almost at the end of our FPIES journey I remember oh so well our first few years. Carson just turned 5yr and for the first time tried a small organic baked cupcake. Its a long way from where he started. His triggers where ALL foods. At age 3 1/2 he started solids and even at 5yr he still takes EO28Splash to help. We are currently dairy free only. Our last ER visit was in April. CHOP this is long over do!!!!! Thanks for waking up!! Hope more families are able to see the light at the end of the tunnel and feel comfort that they are not alone!
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Alison Coons
Fri, Oct 01, 2010
I wish the Foundation all the best. I did not understand the disease until I read your information. One of my dearest friends youngest daughter has FPIES and I am very glad she has a place she can turn to for advice, help or just a "shoulder" to lean on. Best of luck!!! My thoughts and prayers are with all the families dealing with this disease.
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Kerri Jenkins
Thu, Sep 30, 2010
I wish this foundation nothing but amazing things. The site is so very informative and I must say that the parents out there with a child/children with FPIES are some of the strongest people I know.
Stay strong and hug those little babies stronger than you ever have before! GOOD LUCK! |
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Meredith Ethington
Thu, Sep 30, 2010
What a great start to what will hopefully be a foundation that will help so many other Moms! Oh how I wish that something like this had been around when I was first figuring all of this out. Please contact me if I can do anything to help or volunteer. I know at least 2 other FPIES Moms in my city. I'd be willing to volunteer, spread the word, whatever! I used to live in Philly before my FPIES child was born. How great it would be to live there still and have all the support!
Our FPIES story can be found at http://www.fpiesbaby.blogspot.com |
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Megan Parmenter
Wed, Sep 29, 2010
Great job Fallon! The website really tells the story of all of our journeys through this battle with FPIES. I think the name for the foundation is perfect because our familes have become UNITED thoughout our process of trying to learn and fight together. Thank you from the bottom of my heart for all of your support and guidance over the past year. You all have truly become my lifeline and your advice has been invaluable to me and my family.
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