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Jessica is Fine! I am helping a friend navigate starting a site for her sister so I am experimenting with Jess. At some point, we may need this site but for now, she is doing great! Just a brief overview of Jessica's story: Jess suffered a severe hypoxic event at age 5 weeks when she stopped breathing multiple times while ill with RSV & Pneumonia. She has severe brain damage. Her diagnoses include Spastic Quadriplegia Cerebral Palsy, microcephaly, grand mal seizures, blindness, non-verbal, subdural shunts for bilateral hygromas (resolved) and a feeding tube. At age 6, she was diagnosed with a hypertrophic obstructive cardiomyopathy (HOCM)--this is a genetic defect which led us to exploring the other part of Jessica--things breaking from an undiagnosed syndrome. She has had genetic testing twice over the years but no diagnosis yet. The original belief is that she would gradually lose other major organ systems until death. At age 12, she was diagnosed as hypothyroid, her stomach stopped working completely(gastroparesis) and a g-j tube was employed for nutrition. After an almost fatal encounter with sepsis, she was stable for a few years except for ongoing repeats of sinus infections (2 surgeries and more antibiotics than countable). At age 17, she broke a femur, was found to have severe osteoporosis resultant not just from the CP but from the fact that she was making no estrogen. She also lost control of sodium levels. About to age out of pediatrics, her hero doctor recommended seeing an immunologist/allergist to figure out the repeated infections. Low and behold--immune testing discovered that she has Specific Antibody Deficiency whereupon she began immune therapy--Hoorrayy!! That helped SO much! Sadly at age 20, new seizure cropped up, complex partial which led us back to neurosurgeon who confirmed the existence of semi-controlled hydrocephalus. Not a candidate for surgery--the new medication controlled the seizure but seemed to trigger the loss of potassium regulation. Our amazing nutritionist at Pantry Medicine worked up some measures to keep her intestines working so we finally got back to stability again by age 22/23. At age 24 we found that she had extremely high cholesterol which everyone decided was a back burner issue until 2017 when Jessica's younger sister Mary began showing some very odd high cholesterol, low iron and B12. So off we go again--we will be returning after almost 7 years to the geneticist where perhaps, we may finally have an answer. Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.