The Ganago Family

BaBari was diagnosed in 2019 with Pulmonary Hypertension, a very rare disease. We are from Arizona and she began receiving care at the Childrens Hospital in Phoenix but the disease cintinued to get worse. In May of 2021 we were emergently flown from Phoenix to Texas Childrens Hospital because she was so ill the doctors were not sure she would live without a lung transplant. After arriving at Texas Childrens Hospital, she began having severe migraines, one where she actually lost her vision, after doung a brain MRI, they found that she had an autoimmune disease. We have been inpatient for almost a year at Texas Childrens Hospital. Every time we think things are looking better her body has a flare again. She has had two cardiac arrests and this has been the most stressful time in our lives. We are financially struggling. I am a RN but haven't worked now since BaBari has gotten sick, because I am caring for her which has been about 2 years now.