Meet Kameryn: The Face of Persistence

Kameryn: PURA

Here is my amazing Kameryn Rose! She is 15, determined, persistent, hilarious and absolutely beautiful inside and out!

We did whole exome sequencing in June after having done every other genetic test under the sun and received the results of a PURA gene variant. Kameryn is an independent walker has been since age four. She has been seizure free for 14 years, she uses an iPad, some sign language and PECS for her communication needs along with her “never gives up until she gets what she wants¬†attitude!” We have done just about every therapy available- traditional and non traditional. She is in a day program. The program is over the top amazing and we couldn’t be happier!!¬†