I would like to introduce you to my little girl, Brynn! Brynn is my love, my hope and my joy.
We were blessed with the most tiny, beautiful, little girl in 2006! She met her milestones as she grew, except she never was able to walk! She was crawling and she said some words and she could feed herself and hold her own bottle. We thought all would be ok! Except in the back of my mind, I wondered “why is my little girl not walking?” We saw specialist and they too thought all was ok. If she was not walking by the time she was 2, that is when they start to have some concern.
We go on living our lives and enjoying watching our little girl grow and smile and all in all just being a happy babe!
Brynns second birthday came and she still was not walking! I knew something was wrong. I didn’t want this for my babe! I was heartbroken. We saw a neurologist who just couldn’t pin what was wrong. He referred us to an autism clinic. We arrive for our appointment and they did some testing. It amazes me how they test babies! We met with a team of therapists and doctors. They didn’t believe Brynn had autism, but suspected Rett Syndrome. “Rett syndrome? What is that?” So after a simple blood test and 6 weeks of waiting ( which seemed like an eternity) we received Our answer that we had been waiting for. Brynn has a MECP2 deletion that is consistent with Rett syndrome.
I was so heartbroken, yet relieved that we had an answer. This would not change how I felt about her or how she would be loved. If anything Rett syndrome has made us love Brynn even more!
Here are some quick facts about Rett syndrome:
* A debilitating neurological disorder that predominantly affects girls.
* Leading cause of severe impairment in girls- most cannot speak, walk, or use their hands.
* As prevalent as ALS, Cystic Fibrosis and Huntington’s Disease.
* Another baby girl born afflicted every 90 minutes.
* Caused by a random gene mutation every baby girl has equal chance of acquiring.
Brynn is now a 6 year old beautiful young girl who is in kindergarten. She has since regressed in all of the skills she gained as a toddler. But she works hard in therapies and we are hopeful that she will gain some of her skills back. Brynn is not able to communicate with us, but her EYES say it all. We recently got approved for a communication device for her. So we are excited to train her to use that so we know how she feels, what she wants, or needs.
We have held a fundraiser in Brynns honor for the past 4 years. We are hopeful for a cure or treatment for Rett syndrome. There is some promising research going on and we are being very patient and trying to contribute the best way we can.
We hold a 5k called Win for Brynn that is hosted by our non-profit Girl Power 2 Cure. Girl Power 2 Cure is dedicated to raising awareness and funds for research and is an AWESOME support system for Rett families. It’s an AMAZING group all around and we have been with them for 4 years. All I ask is for you to share Brynns story! Awareness is so important to our family! If you are interested in running our race or would like to donate to our raffle, please visit www.gp2c.org/win-for-Brynn. Or if you would like to learn more about Brynn and “meet” her, please visit www.gp2c.org/Brynn.
By: Kristin
