Addie

Addie

I have to admit, I have a soft spot for Addie. I am slowly getting to know Addie and her life with Rubinstein-Taybi Syndrome and she is a sparkler. I am so grateful that Addie’s wonderful grandmother Laury, introduced me to her mother, Terri Hart-Ellis, I could see right away where Addie gets her sparkle from. Terri’s fresh perspective, her passion for advocacy and her love for life is nothing short of contagious.

Addie was diagnosed with Rubinstein-Taybi Syndrome at 2.5 years of age. She has had 3 surgeries, has sleep apnea and parasomnias and is functionally non-verbal. Though she has different cognitive machinery than the average 9 year old, through the help of sign, her communication device and a creative teaching team she holds her own both socially, academically and while navigating the world around her. As her mother shares on her blog (see link below), Addie’s present plans for the future include becoming an Olympic swimmer, riding horses more than once per week, jamming as a drummer and leader of a rock band, meeting Rachel from Signing Times in person, making a guest appearance on Yo Gabba Gabba in the “cool tricks” segment and winning a golden ticket for a tour of Willy Wonka’s factory. But these are subject to change without notice. I have no doubt that Addie will achieve all of the things that she desires. (And Addie, we love Rachel from Signing Times, we hope you get to meet her!)

Terri is a vibrant force in the world of advocacy, she has spearheaded organizations and continues to be a valuable resource for RTS families. Along with her husband, Michael, their daughter Cate and Addie, they continue to coordinate a reunion every year in Wisconsin Dells, WI for RTS families. Michael runs a marathon every year to raise funds that supports families and RTS gatherings. Cate continues to be an active volunteer with disability related organizations. They have embraced a life of advocacy in the most wonderful ways, they are fun, they are passionate and they are doing it together, as a family.

Step into their world for even a second and I promise you will want to stay forever. I invite you to visit the links listed below to learn more about RTS and the experiences, triumphs, challenges and celebrations of this wonderful family. I encourage you to get in touch with Terri through any of the resources listed below. She is a wonderful mother and advocate, she will answer your questions, lead you to further information and will always brighten your day.

Take a few minutes of your time to learn more about RTS and help raise awareness, thank you!

Terri’s blog, filled with insightful perspectives, reflections, and beautiful photographs that capture the magic of their family,

http://farmerjohncheeseandotherjoy.blogspot.com/2010/01/fly.html

A great resource to learn more about RTS,

http://www.ruinstein-taybi.org

The organization that Michael runs his marathon for each year, and a quick glimpse at Michael’s commitment to supporting RTS families,

http://specialfriends.org/

http://www.firstgiving.com/fundraiser/michael-ellis-2/rts

Here is a wonderful interview with Terri about her writing, her family and choosing hope and happiness,

http://supportforspecialneeds.com/2010/09/23/choosing-hope-terri-hart-ellis/

Organizations co-founded and founded by Terri,

https://www.facebook.com/pages/Citizens-for-Inclusive-Thinking/166336070077276

https://www.facebook.com/pages/North-Shore-People-Network/130883463641617

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