Hallie was born October 9, 2018 and within a few days of her birth, she started crying constantly and became extremely constipated, bloated, and would throw up all the time, among other things. As time passed her symptoms continued to get worse and she was so uncomfortable that she would literally cry 24 hours a day. Even when she was sleeping, she was still whimpering and would require constant soothing to try and keep her asleep. After many months of tests, surgeries, and countless doctor appointments and ER visits, at 14 months old, following an endoscopy/colonoscopy biopsy result, she was finally diagnosed and an incredibly rare form of Eosinophilic Gastrointestinal Disease affecting her entire GI tract with the main concentration being in the esophagus, stomach and colon. Eosinophilic Esophagitis, Eosinophilic Gastritis & Eosinophilic Colitis.
Which very, very simplified, causes severe inflammation and makes her body have a severe allergic reaction to all food. That’s right...ALL food. The thing every living creature needs to survive is making her sick. So immediately following her diagnosis she was taken off of food and given a feeding tube through which she is fed a highly specialized type of formula. In that moment their lives went from bad to worse, and things have just continued to get more and more difficult from there. Her symptoms have not yet improved and now they have the substantial medical aspect to do deal with as well as they try to get her symptoms under control.
The financial impact of Hallie’s illness has been huge. Between Cari being unable to return to work, Jon having to significantly cut back on his side woodworking business, and missing so much time at his regular job, the financial impact is about $2500 per month. Then on top of that is the medication costs for which they have no insurance, the transportation costs to all of the constant appointments that Hallie has, and the increased basic costs of living due to having a sick child. The current total monthly impact is $3500 per month. And with each failed treatment plan that cost raises substantially.
Because Hallie is unable to eat food they need to keep all food hidden in their house. She is only 16 months old so she doesn’t understand that it’s not good for her and she gets very upset when she sees it and can’t have it. This makes any sort of food prep incredibly difficult. Hallie still cries a lot so she needs to be carried around for a big portion of the day, and you can’t keep her from seeing the food you’re preparing if you’re holding her. As a result a lot of their meals have to come prepared from a deli or restaurant which significantly increases their food costs.
Hallie’s disease is incredibly rare, but the colon portion of it is even more rare with only a few cases being reported since 1979. This has made treating it incredibly difficult with no improvement thus far. Likely next steps will include immunosuppressive therapy which would come at an additional cost upwards of $2500/month, again for which there is no insurance coverage.
Because of the rarity of this disease and the difficulties in treating it, the family is looking at bringing Hallie down to the Cincinnati Centre for Eosinophilic Disorders at Cincinnati Children’s Hospital. This clinic is highly specialized and is a worldwide leader in research and treatment of Eosinophilic Diseases and would definitely be the best place to get help for Hallie, however because it is located in the United States this would all come at a direct cost to the family. And those costs would be significant, much greater than the goal of this fundraiser.
If you know Jon and Cari, you will remember the huge health crisis that Cari fought about 9 years ago with an autoimmune joint disease. She is now healthy, but the financial hit of that illness was huge. The over two years of illness came to them at a cost of over $100,000. They have worked hard at paying down this huge financial burden, but now adding Hallie's health care costs on top of the approximately $50,000 they still have remaining, is far more than any of us could handle on our own.
Thank you so much for taking the time to read this page and your contributions to the costs of Hallie’s care are greatly appreciated. God bless.
For a more in-depth look at the difficulties the family faces each day in caring for Hallie, follow this link to a post Cari recently wrote for a blog entitled There is More.
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