In early March, an endoscopy revealed severe damage to Chloe's intestines. The only treatment for celiac disease is a strict gluten free diet and vigilant avoidance of cross contamination (replacing 2/3 of our kitchen supplies, not eating out, bringing prepared food wherever we go etc.).
While this often costly diet is the only treatment for celiac, getting relief for the persistent body symptoms requires on going access to other specialists, care providers, and treatment modalities. Her pain and fatigue so severe that she had to be pulled out of school last year.
Chloe is now 9 months into this journey. She's been a pillar of strength, never once cheating on this diet even though she had to give up many favorite foods and all feelings of being able to eat normally. Her path to recovering her health is so slow and gradual. Chloe did re-enroll in school this fall but has not attended a full week of school since December of last year. She is now primarily dealing with:
- debilitating fatigue,
- chronic pain,
- brain fog,
- nearly constant headaches and sore throat,
- and abdominal pain.
In July the GI doctor said that the goal is to get her healthy and functioning again by college when she hadn't even started 10th grade.
Helping Chloe heal has required my constant focus and attention, while also guiding both her and Isaac through these initial months of grief after the traumatic loss of their dad. She needs assistance with even the most basic tasks on most days.
It has been difficult to work and as a small business owner, I have no option for family/medical leave or short-term disability. It is also a costly endeavor to support her health and healing. Even with insurance reimbursement, we are on track to spend $15,000 by the end of next month on medical bills, medication, and supportive treatments since the beginning of the year. This does not include our increased food costs (it now appears that going dairy-free is necessary which will further increase food costs). Additionally, I drive between 150-300 miles a month for appointments.
These circumstances require an intense level of physical and emotional support. Though the kids do receive social security death benefits, there was no life insurance when Brian died in January. If there had been life insurance I would have taken an extensive, complete leave from work. I do continue to work piecemeal every day to keep my business afloat and growing.
It is difficult to ask for help. It is not where I imagined we would be and I want to say "I've got this!", but we are now at a place where I can see more clearly than this is not going to get easier or less costly in the near term. Many friends and loved ones have asked what can be done to help support us during this difficult time. Any donation or sharing of this campaign will be so appreciated. Just knowing we can have medical bills covered for a few months would be such an enormous relief.
With gratitude and love,
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