Welcome Friends!
Charity M.
Arizona
Birth Date - June 4, 2010
Main Diagnosis - Mitochondrial disease w/glycogen storage disease tendencies
THEME: PM animals
Biography
Charity was born at 38 weeks gestation. Aside from reflux, all seemed well the first 6 months of her life. Between 6-12 months of age, her growth slowed. As she was introduced to baby foods, she began having more episodes of vomiting and diarrhea with acidic rashes where ever the stool touched.
Just after Charity's first birthday, we knew there was a major problem with her and food. She was having 10-12 diarrhea diapers a day, and her rash was terrible. She was also losing weight.
We were told it was celiac disease and food allergies. We changed her diet. However, she did not start gaining weight back as expected. We were then told it was likely eosinophilic esophagitis.
When Charity was 13 months old, she had her first hypoglycemic episode. The problem started as something that happened every few weeks, then weekly, then daily, and now it is a constant issue we fight against.
Fast forward to a morning in September 2012, and we could not wake Charity up one morning. She was admitted to our local children's hospital where a g-tube was placed in an effort to control her hypoglycemia and give her more nutrition than her diet of 6 safe foods could give her. She had failure to thrive.
Once she got the g-tube, we expected everything to turn around. The g-tube helped bring her out of failure to thrive and did give her the nutrition she needed. However, Charity's symptoms continued to escalate.
None of her doctor knew what to do here. We were told repeatedly that it was a metabolic disorder. Upon researching, we began to suspect it was mitochondrial disease. We flew to Atlanta to see a mitochondrial specialist.
That doctor confirmed it is mitochondrial disease with glycogen storage disease tendencies. Charity's GI system cannot handle any food at this time, she is 100 percent g-tube fed an elemental allergy free formula. Charity has reflux which requires two medicines to control it, one to reduce acid, and one to force her stomach to contract the food into her intestines. Charity has chronic diarrhea, but also has constipation (interestingly, when she finally "goes," it is still diarrhea). Charity has high liver enzymes, and if it continues one more month she will have a liver biopsy. Charity has severe hypoglycemia, and cannot tolerate being off her tube feeds for more than 30 minutes at a time for reflux medicine breaks. Charity has autonomic dysfunction, she has no normal temperature, can have an irregular heart rate, and flushes easily. Charity has hyptonia with balance issues and low endurance, she is in physical therapy.
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All squares were donated by Carol M
