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Makaila
$100 raised
5% of $2k goal
2 contributors
0 days left
Ended Sep 9, 2014
Makaila was diagnosed with an Eosinophil Associated Disorder called Eosinophilic (pronounced e-o-sin-o-fil-ick) Esophagitis or EoE in November 2011. Eosinophilic Disorders are poorly understood and often misdiagnosed. While Makaila may look healthy on ...
Makaila was diagnosed with an Eosinophil Associated Disorder called Eosinophilic (pronounced e-o-sin-o-fil-ick) Esophagitis or EoE in November 2011. Eosinophilic Disorders are poorly understood and often misdiagnosed. While Makaila may look healthy on the outside, the reality is that this is a very difficult disease to live with. Makaila has handled everything quite well physically, mentally and emotionally thus far in light of the fact this disease has altered her way of living greatly, which in turn has affected our entire family. The following information was borrowed from the Children's Hospital of Philadelphia and APFED to help everyone better understand this disease. Can you imagine being allergic to all or nearly all food? What is EoE? EoE is an auto immune disease characterized by a large number of white blood cells, called eosinophils. Eosinophils are the least common of the white blood cells and make up about 1 to 4 percent of the blood's cells. Eosinophils cause life threatening problems when they appear in high quantities in areas other than the blood and intestine. What causes EoE? Food. In many cases children are allergic to all food. Imagine no cake or pizza at birthday parties; no Turkey on Thanksgiving. Imagine children who would give anything to even eat a bowl of broccoli or brussel sprouts. What is the impact of EoE? EoE kids have severely restricted diets or cannot eat any food at all. If they cannot eat any food, they are sustained on an amino based liquid referred to as an "elemental diet". Many find the taste intolerable so they consume it through a feeding tube. This formula can cost $100/day and most insurance companies do not cover this cost. Parents have to spend hours on the phone with insurance companies, lawyers, state representatives and welfare departments to try to get it covered. Many times they are unsuccessful - creating a HUGE financial hardship on families that are already over-burdened. EoE kids can have severe pain in their throat and stomach with chronic coughing and lots of vomiting. They are prone to lots of infections. Food can get stuck in their esophagus leading to life threatening consequences. Babies are often deemed failure to thrive and kids have growth issues. Many are dependent on oral steroids which further weaken the immune system and can stimulate behavioral issues. EoE kids have frequent surgical biopsies called endoscopies - all with anesthesia. While this is a great overview of what can happen with the disease, there are many other symptoms that can be present that can vary from patient to patient. This fund raiser is to raise money to help cover the cost of Makaila's Elemental formula which is $1,800 per month.
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