What We Didn’t Know

What we didn’t know! This certainly explains EOE Disease and DeMari. When DeMari was a baby she had constant trouble swallowing and would choke and gag on liquids and solids. It got to the point that she wouldn’t eat. We addressed the issue many times with various doctors but they didn’t see anything alarming. When DeMari was 3 she had her tonsils and adenoids removed because it was then determined that they were so large that it was forcing food and liquids down the incorrect tube. After they were removed nothing improved. We were sent to GI and after multiple test we were told on 9/26/15 that she had EOE disease and it was pretty severe. At 3 years old a child that already wouldn’t eat was being forced to eat even less and take daily meds to try and control the eosinophil numbers in her esophagus. Nothing changed after over a year and countless biopsies and surgeries. Constant changes in meds, foods and allergies and there seems to be no end in sight but what is amazing is the spirit of this now 5 year old. She rocks her EOE and owns every part of it. She wants to be in total control of her care; she will ask the doctor any questions that come to mind when it comes to her EOE. She is not afraid to speak up about what she can’t eat and why. DeMari is such an amazing little girl and she definitely gives her father, brother and I something to fight for. Her extended family and support system is amazing and we are all focused a cure and whatever treatment that will make her life a little easier. She knows that there is no cure at this time and she will likely live with this for the rest of her life so now she focuses on making sure she takes her meds, telling adults to read the ingredients and speaking up when she thinks she may be allergic to something. As a parent it is really hard to watch your child deal with something so debilitating but DeMari is very strong. She is determined not to let EOE defeat her or prevent her from being great at everything that she puts her mind to.
https://flutter.nationwidechildrens.org/wp-content/uploads/2017/11/Message_1480874189382-e1510601223647.jpg
https://flutter.nationwidechildrens.org/wp-content/uploads/2017/11/105-e1510601098826.jpg

What we didn’t know! This certainly explains EOE Disease and DeMari. When DeMari was a baby she had constant trouble swallowing and would choke and gag on liquids and solids. It got to the point that she wouldn’t eat. We addressed the issue many times with various doctors but they didn’t see anything alarming. When DeMari was 3 she had her tonsils and adenoids removed because it was then determined that they were so large that it was forcing food and liquids down the incorrect tube. After they were removed nothing improved. We were sent to GI and after multiple test we were told on 9/26/15 that she had EOE disease and it was pretty severe. At 3 years old a child that already wouldn’t eat was being forced to eat even less and take daily meds to try and control the eosinophil numbers in her esophagus. Nothing changed after over a year and countless biopsies and surgeries. Constant changes in meds, foods and allergies and there seems to be no end in sight but what is amazing is the spirit of this now 5 year old. She rocks her EOE and owns every part of it. She wants to be in total control of her care; she will ask the doctor any questions that come to mind when it comes to her EOE. She is not afraid to speak up about what she can’t eat and why. DeMari is such an amazing little girl and she definitely gives her father, brother and I something to fight for. Her extended family and support system is amazing and we are all focused a cure and whatever treatment that will make her life a little easier. She knows that there is no cure at this time and she will likely live with this for the rest of her life so now she focuses on making sure she takes her meds, telling adults to read the ingredients and speaking up when she thinks she may be allergic to something. As a parent it is really hard to watch your child deal with something so debilitating but DeMari is very strong. She is determined not to let EOE defeat her or prevent her from being great at everything that she puts her mind to.

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