[Amber]

Can anyone give me the names/locations of doctors that are prescribing Etravirine for FA? Who do you see that is willing to give this a try?? PLEASE, any help is DEEPLY appreciated! Thank you!

[Amber]

My daughter was 9 when the OFFICIAL diagnosis was made of FA, she will be 11 in December. However, my husband and I knew from the age of 2 something wasn’t quite right with her gross motor skills. She was #5 of our 6 children. She had been slightly delayed with learning to crawl, pull up to stand, and learning to walk. Her pediatrician assured us that “all children are different and she is just taking her time learning,” Or, “All toddlers fall, she’s just clumsy.” As time went on, she continued to struggle with walking and fell VERY frequently. About the time she was 4-5 and in school is when we REALLY noticed something WAS not right. Her school contacted us with their concerns that she was not able to do things, physically, that other children her age could and she tired more easily. We changed pediatricians and started over. Her road to diagnosis has been very long. The hardest appointment was when we met with the genetic counselor and really sat down and explained what it is that she has. FA is still confusing to her. She has questions everyday. She has good days and bad, emotionally. Currently, she is still able to walk with some assistance, has cardiac problems, and tires easily. She is a very brilliant girl with an enormous heart, loves school, ANY type of animal, she was recently asked to join the mental math team at her elementary school (first competition next month :)). She is JUST like any other girl her age, she just so happens to also have FA. Right now we just take things one day at a time, and tackle each obstacle as they come.

[Amber]

I was just wondering, what’s the youngest FAer anyone may know of that is trying/has tried Etravirine? I’ve read the previous posts and can’t help but become tearful with all the HOPE your experiences bring.