Travis Carpenter was diagnosed with NF1 at 6 months. Years of visiting different specialists and trying different treatments did not yield the progress Travis’ parents and doctors were looking for. Read more about that part of the journey here. However, things started to turn around in November 2015, when Travis enrolled in the MEK-inhibitor AZD6244 (Selumetinib) clinical trial at the NIH.
While not yet a cure, Travis’ life has improved with enhanced mobility and better health. We asked Kelly, Travis’ mom, to tell us more about Travis’ progress and how it has impacted his life at the young age of 10.
I was 4 years old when I was diagnosed with NF1, but there were signs early in life that there was something wrong. When I use to run, my legs would run out to the sides, due to a low center of gravity. It also affected my motor skills. I had to be stitched up three times before I was 18 months old, as I kept falling down our back stairs, and the nurses use to think that my parents were harming me, for me to be hurt that many times in a short time period.
By Megan Ross
I stepped off the light rail into the damp afternoon. A man who had been in the same train from downtown Portland remarked about the drizzle that lightly fell. I smiled.
“I like your smile,” he said, “I hope you don’t mind, when I first saw you, I wanted to feel sorry for you.” He motioned to his face, referring to the disfiguring tumors on mine. “But I see life in you. It’s in your eyes.”
Frankie and Olyviah are siblings living in Eugene, Oregon. Both Frankie and Olyviah were diagnosed with NF as babies; their mom, Ayanna, also has NF1. As the 2018 NF Ambassadors, Frankie and Olyviah will attend the NY Gala on November 9, 2017 in New York City. They will also continue their involvement with the Foundation throughout the year at the annual Seattle NF Walk, NF Camp and other events that take place around the country.
“We first learned of Trinity's diagnosis when she was 4 years old. We thought there was just no way that she could have THAT many birth marks and she was constantly falling, she was always one big bruise. We took her to her pediatrician and lifted up her shirt and come to find out she already had over 50 cafe au lait spots. We had no idea what on earth it was, nevertheless how to pronounce neurofibromatosis."