Our daughter Janna was diagnosed with neurofibromatosis type 1 when she was five months old. Doctors tell us that it caused a heart defect, which she had open heart surgery for when she was thirteen months old. Janna has many other medical issues from NF1 including hearing issues, an optic glioma (tumor on the nerve of the eye), and feeding and growth issues. She had a feeding tube placed when she was seven months old.
NF Midwest helped us find an NF specialist and Janna had chemotherapy for her optic gliomas. If we hadn’t found this specialist, Janna may have lost all vision. When my husband or I have a question we can ask NF Midwest and get a reliable response which means a lot to us. We have even received an answer on weekends.
As of right now, Janna is a happy three-year-old who loves her baby dolls and giraffes so much. She enjoys life to the fullest and always has a smile even though she has been through so much at such a young age.
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