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B's brave fight against FPIES
Posted on February 12 2015
There is no test to diagnose FPIES. There is no cure. And there are no guidelines on what to feed your child. Some children react to a few foods, and some children have no foods that are safe to eat. Some children have severe reactions to their mother's milk and it is a struggle to find a formula for them to drink. Some children quickly outgrow it and other children rely on feeding tubes to live.
Every child with FPIES is extremely different. The only way to figure out what foods the child will react to is by feeding it to him/her and waiting to see if he/she gets sick. Imagine if any time you ate a food, it could make you sick. Imagine not knowing the outcome. Imagine being that child.
FPIES makes you live in a world full of unknowns. There is such little research and awareness on FPIES that most doctors have never even heard of it. It can take many months of hospital visits, doctor appointments, and unnecessary, invasive testing before these children get diagnosed. And once they are diagnosed, there is little to no guidance. These families are left fighting everyday to find a food that their child can eat. Something that will nourish their child's growing body. At the same time, they spend every second trying to avoid a reaction, making sure their child does not ingest even a trace amount of a trigger food.
We are parents of a child with FPIES. We have seen first hand the lack of knowledge on FPIES in the medical world. We have been tossed from specialist to specialist. Our child has been through a handful of tests and procedures. We have watched our child go through horrific bouts of vomiting every time we try to feed him. We have helplessly listened to his painful screams. We have held his limp body in our arms and rushed him to the ER. And yet we continue to bring a spoon to his mouth, in hopes of having food provide nutrients to his little body. But instead, we usually watch it act as poison in his tummy. To not know why this is happening, to not have a cure, and to not have an outline on what to feed our child is a feeling that we do not want anyone else to ever have to endure.
We believe that our child deserves the best. We believe EVERY child deserves the best. Even though FPIES is rare, there are many children that are suffering from it daily. There are children who have not been diagnosed. They are in the ER every time they eat a trigger food, with no answers. And unfortunately, there are future children and families that will walk through this scary FPIES journey.
There needs to be more information on this disease, and without the funding there never will be. Families will continue to endure the painful realization that their doctors cannot help them, because they do not have the information needed to diagnose them or guide them. We are hopeful that with your help, we can raise awareness of the disease. Part of your proceeds from this bracelet will go to the International FPIES Association to help research FPIES. To bring answers to these families and their doctors. But also, by wearing this bracelet, you will bring awareness to this rare disease. Your bracelet will start conversation with other people. It may teach a doctor or a nurse about FPIES. It may reach a family who's child going through FPIES reactions and isn't diagnosed yet. It may make others more accepting and understanding of the seriousness of food allergies.
We need to bring more awareness to FPIES. Every dollar and every conversation makes a difference.
We have a brave and resilient little boy. Every day he battles against the struggles and pains that come with FPIES.
There are children all over the world fighting the same battle but they cannot do it alone. Like our son, they deserve the research and information for a better, healthier, and happier life.