Condition: Fragile X Syndrome
City, State: Central Point, OR
Club: Logos Public Charter School Sparrow Club Service Hours:
Date Adopted: 10/21/2015
Owen is a happy and handsome little boy who will turn five years old on November 4, 2015. While Owen may physically look like other little boys his age, his cognitive skills have not developed at the same pace. Owen was diagnosed with fragile X syndrome (also known as Martin-Bell syndrome) at the age of eleven months.
Fragile X syndrome (FXS) occurs when there is a defect involving the X chromosome and a specific protein needed for normal neural development. This results in a spectrum of intellectual abilities ranging from mild to severe, and can cause specific physical characteristics as well, such as low muscle tone.
Although Owen is nearly five years old, doctors place his cognitive development at the age of 12-24 months. Owen has also been diagnosed with autism (nearly half of all children with fragile x syndrome meet the criteria for an autism diagnosis). Owen struggles with texture and sensory issues and is on a strict diet free of gluten, dairy, and soy.
Owen’s father David does everything he can to advocate for Owen and his needs, including taking Owen to Missouri for specific tests and examinations to learn more about Owen’s condition. David says that there is a lack of resources available to help Owen and that the greatest need is for additional therapy which is very expensive and must be paid for out of pocket (Owen currently has physical, occupational, and speech therapy only one time per week).
Owen loves music and vibration and loves to look at books, especially if they involve Blue’s Clues and Mickey Mouse Clubhouse. Owen’s younger sister Addison is very fond of him and often acts like a protective big sister. It is unclear at this point what Owen’s future will hold, but one thing it will not be missing is love.
Owen will be adopted as a Sparrow to Logos Public Charter School in Medford. Logos students will work hard to make a difference in Owen’s life through sponsored community service and fundraising projects.
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