Oaklynn's Page

Make an online donation to Rett Syndrome research in honor of Oaklynn!

Girl Power 2 Cure funds research through RSRT. Click to view the projects

Special Thanks for Oaklynn's 2017 Donors
Brianna Merrill Peter Forsgren
Amber Osswald Katy Glemser
Kristin Mitchell Kelli O'Neil
Lauren Porter Brittany Calkins
Austin & Whitney Cooley Marla Ridges
Kimberly Stone Kelli O'Neil
Heather Heyland Mike Martinez

Oaklynn's Story

Oaklynn was born a healthy 8lb 9oz baby. She started meeting all her milestones and doing everything she should be doing. Our first concern was when she wasn't crawling yet and only using one arm and one leg to scoot around (8months). Shortly after that we noticed more things changing. Oaklynn couldn't hold her own bottle anymore, grip and hold onto toys, do sign language, use any words, pull to stand, had a hard time sitting on her own and many other things that she was previously able to do (12months).

I was told by many doctors that she is just developmentally delayed but she would catch up and be fine. That answer wasn't OK with us so we kept searching for doctors who would listen to us and not just treat us like paranoid parents. After many tests and many doctors, we finally found one that did blood work and found a diagnosis!

Oaklynn was diagnosed with Rett syndrome at 21 months old when I was 36 weeks pregnant with her little sister. It was extremely hard to hear the news but we already knew something was wrong and were happy to finally have a diagnosis. We mourned for the child we now knew we lost and quickly turned around and celebrated the child we now have.

We're trying to learn how to communicate with her and now that we know she understands us, life is so much better. She is a very happy and loving little girl. She loves music, dancing, swinging, cuddling and school. She is the best thing that has ever happened to us. She is 6 years old and has a younger sister and 2 younger brothers. We are blessed to be her parents and love her very much. We hope to be able to one day have a cure!

Please head over to my sisters blog to read a heartwarming post about Rett syndrome... http://stephaniemoorestudios.com/blog/2012/05/getting-really-personal-tucson-childrens-photographer-phoenix-childrens-photographer/

Please feel free to follow our journey with Rett syndrome:
Facebook - My Silent Angels Fight
Instagram - "special_needs_mama"