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Jun 7, 2019
Carly is our delightful daughter, the youngest of three incredible girls. She was born May 13, 1998 with various health and developmental challenges. At 2.5 years old, she was finally accurately diagnosed with Angelman Syndrome. Carly's genetic testing shows a missing portion of the UB3A gene on her 15th maternal chromosome is missing. This condition presents with global developmental delays, a movement disorder, seizures, sleep difficulties, gastro-intestinal problems, sensory processing challenges and a complex communication disorder. Carly is non-verbal but uses her eyes, body language and reaching for choices to communicate many of her needs.
Carly's life is proving to be a monumental joy amidst a myriad of challenges. There will never be enough ways to say what a treasure she is to us, her family. We're all still growing and learning a lot from each other about life, faith and friendship. We hope you will be willing to make discoveries about faith and community with us. We hope followers of this page will pray for Carly and her whole care team. As Carly transitions into adulthood and a new routine without school every day, we are experiencing some new stresses along with the fun and flexibility of less structure in her life. It's lonely though. One of our greatest challenges at this point in Carly's life is finding ways to keep her connected in her community and growing in social relationships. Please pray for that! In many ways, there is renewed anticipation and excitement about what is yet to come. God has much of Himself to reveal to us and delight us with as walk through a special needs journey we never expected but continue to appreciate.
As Carly's mom and one of the people who knows her best, I was recently asked to write a vision statement to describe what Carly might tell us if she was asked about her hopes and dreams. I hope and pray this gives justice to our precious daughter and her future:
"I hope to live an active life with my family and a few close friends, serving my community and showing my love for God in as many ways as possible. I want to live at home with my family as long as I can. I want to be contributor where I live by helping with things like making my bed, cooking meals, mowing the lawn, watering plants, bringing in the mail and growing in my personal responsibilities. I’d like to keep taking dance classes at Darby’s Dancers, going to church on Saturday nights, attending summer camp, travelling with my family and being an encouragement to others. I like attending shows and concerts, going shopping, making music and listening to it, going swimming, relaxing outside and riding anything that moves. For fun, I want to try new things like Special Olympics bowling, music therapy classes, and volunteering in my community. I think it could be fun to bake cookies or muffins and then deliver them with a cart/wagon to people like my neighbors and the staff at my church. I also think it would be fun to be a greeter at my church, concerts, disability ministry conferences and other community events.I would like to learn how to communicate more effectively, especially so that I can make more of my own choices. One of my goals for the future is to learn how to drive a golf cart."