My Nonprofit Reviews

Are story is are daughter was diagnosed at three months old due to cafe-cals showing up. Are first year with the diagnosis with NF1 we basically had no idea what we where dealing with except what we where told or looked up. In prosses of looking things up I found that their was a walk-thon for NF near us. I signed up for the walk and got a phone call about a week later it was Diana form NF mid weast an I missed the call but called her back once we finally got connected I told her about are daughter. Just a few things that she has on her problem list are: Glioma of orbital part of optic nerve of right eye, VSD, ASD secundum(had open heart surgery for ASD),failed hearing(had tubes put in both ears),congenital ptosis of right eyelid, developmental delays, headaches,possible sensory disorder, nonintractable epilepsy with complex partial seizures, and has a g-tube due for failure to thrive. These are a few of her major issues that we deal with. But since we found NF Midwest we have found a doctor that deals with NF children primarily and have meet many other people with NF or know someone that has it. If we have a question about are daughter we can ask and never have we had any problems with anyone we have meet.