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Caregiver Stories - Joy Bux

Joy Bux adopted her daughter Renee at the age of three months. She had been hospitalized right after birth and diagnosed with “failure to thrive,” but then began making steady progress. Joy noticed delays in Renee's development that she now recognizes as signs of myotonic dystrophy. At the time, however, other than a diagnosis of "global developmental delay," there was no explanation for the challenges Renee experienced. At age 3, after being referred to a geneticist, Renee finally received a diagnosis of DM.

Over the years, Renee has received a lot of support and care from doctors, therapists, educators, family, and friends. In her early years, the focus was on learning about DM, providing therapy, discovering and utilizing the right services, and offering emotional support. While Renee has learned a great deal about social interaction, it’s still difficult for her to form typical teenage friendships due to her cognitive and emotional delays. She recently joined a small social group that meets once a month — without parents — and she looks forward to that independent time.

"I have to focus on her potential and the discovery of her life’s path: education, independent living, employment, and self-determination," says Joy. One way that has taken shape is through the development of a transition plan, which is part of Renee’s special education services. She acknowledges that some of Renee’s dreams are more realistic than others but she wants to support Renee’s vision by helping her overcome her challenges and capitalize on her strengths. 

"In the end," Joy says, "I want her to have what most parents want for their children — a job they enjoy, social interactions with friends, a comfortable place to live, and family and friends who love her."

 

 

 

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