Trinity Marie 's Page

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Trinity Marie 's Story

My name is Trinity and I have Rett syndrome! I do not walk or talk on my own. I am usually a happy girl, always smiling and giggling. Sometimes when I am out with my mommy I get really excited and tend to scream with excitement. There are certain things that I can not do and I require alot of help and patience.

Trinity was diagnosed with Retts at 2 years old. I started to get worried when she was young because after she hit 8 months she stopped hitting her milestones. We got involved with DDI and found her a specialist that works with children with developmental delays. Finally after a long battle with the insurance company we got the genetics testing approved and within a few months we knew what it was. It was so hard to hear the diagnosis for the first time, I wasn't exactly sure how to react but some how by god's good grace we pushed through.

It has been a long road since we first learned that Trinity had this disease. I wish that there was more that I could do. She doesn't walk or talk quite yet but we are extremely hopeful that one day she will. When other children her age are running around and playing Trinity does her best to join the group. Trying to stand on her own has resulted in her falling on her face but she just gets back up and tries again. She is so motivated and she just never gives up.

Trinity recently started to have seizures. I was praying with all my heart that she wouldn't It breaks my heart when she looks at me wanting answers and I don't have any for her. Trinity wants to be just like everyone else, when you look into her eyes you know that she is 4 but her body won't let her do the things that she would normally be able to. She is sweet, smart, funny, and has a huge heart! But I promise that she is my heart and I will forever be her voice and I am here in hopes to help find a cure for these perfect children!

Trinity loves to be outside and swim. She is always laughing and smiling and makes everyone around her smile. We hope one day for a cure for our beautiful angel! In hopes one day she will run and play and do anything her heart desires!