He is my heart

Hello, Rett Families! We would like you to meet one of our board members, Tracy – a mom to three precious children. Her son has a diagnosis of Rett Syndrome.

As a board, we felt it was important to learn more about boys living with Rett Syndrome.  We hope you enjoy Tracy’s first blog as much as we do!


“I was asked a week ago if would consider posting on the RSAM family blog about raising a male with Rett Syndrome. I immediately said, probably no, as I feel like I am always the one yelling and shouting from the rafters, what about the boys with Rett? I was given the very blunt answer of yes, you are that person fighting with everything in your heart. People will hear you. I think the exact words were, your a mover and a shaker.

So, I come to you today, with my first official post.

I don’t know a lot of the answers, I am often overwhelmed by the questions and uncertainty of a child with Rett Syndrome.

I always dreamed of being a mom. I believe I often said I wanted 10 children, as many as possible. I loved being pregnant! How could you not? It was such a magical time in my life, and the outcome was a beautiful baby.

Simply, amazing.

I love being a mom. I have 3 beautiful children and one of them happens to have Rett Syndrome. I never dreamed I would have a 7-year-old son who needs a wheelchair, has a pacemaker, feeding tube, trache, and relies on a vent to keep him alive and breathing while he sleeps. It has been a whole new world for myself and my family.

We have learned so much from this amazing human being. Aidan has taught each of us to be better human beings and to love with everything inside of us. He has taught us to question and to be ok with that person yelling and demanding for answers. He has made this world better. He has made us do things we never would have dreamed of trying to do in our lives. He inspires us… His strength and courage have united us and he simply completes us.

I have so much more I can share in later posts, regarding treatments, and medical advice but today I thought I should just let you know why I am blessed to have this child. He is my heart.”

All my love,

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