FAMILY SPOTLIGHT:

MEET DEVIN CARPENTER

Meet Devin, a twelve year old boy who lives with his mom, Courtney, in Wichita, Kansas.  Devin was born with Mosaic Trisomy 22, a rare chromosome disorder in which chromosome 22 is present three times, instead of the usual two times, in some cells of the body. The severity of the disorder can depend on the number of cells in which the extra chromosome 22 is present and, for him, it’s the cause of his deaf-blindness.  Family has always been the cornerstone of support for him and his mother.  Devin is pictured here at the pool in his Grandma and Grandpa’s back yard – which happens to be his favorite place to swim!

Although he goes swimming on a regular basis in community pools, his grandparents’ pool is hands down his favorite place to swim.  Why?  Because he can slowly inch his way into the water scooting down step-by-step to get used to the water temperature, he’s rarely surprised by unexpected movement and splashing of those around him, and he knows the dimensions and depth changes of the pool. 

For Devin, consistency in routine and providers has been the key to his educational development.  Not only is he fortunate to have an amazingly supportive family, but his educators consistently go above and beyond to meet his needs and challenge him to become an independent young man.  His teacher, through a scholarship awarded by the Kansas Deaf-Blind Project, was able to complete the intervener training program through Utah State University.   According to his mom, Courtney, this foundational knowledge of deaf-blindness and a comprehensive understanding of the unique needs of her son have been the key to his growth.   The two areas in which she has seen the largest amount of change in the last few years have been with his expressive communication and his mobility.  Courtney recently became a member of NFADB and is looking forward to it being a lifetime connection for she and her son, as well as, an opportunity to meet other families across the nation who have children with similar needs.

For more information on Mosaic Trisomy 22:  http://www.c22c.org/mt22.htm