Sonya has the unique ability to see beauty and amazement in everything around her. Sonya is kind, bright, beautiful, and proud. Her favorite activities are singing, coloring, horseback riding, and playing with her baby sister. After nearly four years of constant tests and doctor visits, her family finally received the DDX3X diagnosis. It was more of a relief than anything as they finally had a direction to move and found the DDX3X family on Facebook. The other parents in that group have helped tremendously in how Sonya’s family has navigated their daughter’s journey with DDX3X syndrome. Sonya’s extended family took the news harder as many were in denial. There were many tears initially, but they have all rallied together to support Sonya with all she needs. Sonya had strenuous physical therapy at two years old to teach her to walk and that therapist was amazing. She was firm with Sonya and celebrated every small achievement. Currently, Sonya receives speech therapy and hippotherapy outside of school and occupational, speech, and physical therapy in school. Sonya’s family offers the following advice to newly diagnosed families: join a support group and always reach out to someone (support group, friends, family, etc.) when things are hard, and you need help.
Braylee was born February 2, 2014. Pregnancy was normal, but she decided to make her appearance at 36 weeks. She spent 3 weeks in the NICU due to failure to thrive, low blood sugar, breathing abnormalities and two different CHDs.
We finally got her diagnosis in November 2015. We have since become part of an amazing group of families and caretakers. Lena recently celebrated her 2nd birthday by learning how to crawl!
Kate is globally developmentally delayed, non-verbal and has autistic characteristics. She attends school in a severe/profound program where she continues to make slow but steady progress.
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