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Empowering Individuals with Developmental Disabilities

The Shelton Family – Gordon, Virginia (Ginny) & Bonnie

SCARC has been an empowering vehicle of support for the Shelton family in their personal drive to promote the developmental disabilities movement. The organization has helped them cope, join forces with others, and celebrate their loved ones and their dedication to the effort. The last 30-plus years for the Sheltons has grown their ‘extended family’ from just a few to hundreds of people they have come to know and love as they journey through their quest to find answers and enhanced supports for individuals and families with developmental disabilities.

Bonnie Shelton’s bright eyes and beautiful smile lit up a room from the day she was born. However, even at the age of 3 her family could tell that her development was lagging behind established ranges and that their beautiful daughter was special.

“We got involved with the SCARC organizations very early on,” said Virginia (Ginny) Shelton. “My husband and I immediately became a part of the movement for individuals with developmental disabilities, because we knew we couldn't make a difference alone. Back then diagnoses were still in a somewhat primitive form and we knew we needed support." Bonnie and her family which included Gordon (her father), Ginny (her mother), Dawn (her sister), Debra (her sister), and Bruce (her brother) were immediately added to the SCARC, Inc. extended family, where Bonnie was well loved and received by both staff and other program participants and their families.

However by the time Bonnie was 10 and still undiagnosed, Gordon and Ginny were restless for answers as to what was going on with their little girl. “Neurologists were at a loss and it was frustrating for us,” remembers Ginny. “Gordon and I just started attending various conferences trying to find answers.”

That year, Gordon and Ginny attended a seminar at the National ARC Conference where they first learned about Rett Syndrome and realized this was the disease that Bonnie had. “I remember listening to the speaker (Dr. Andreas Rett) with my husband and Richard Lecher, SCARC’s Chief Executive Officer, and seeing the photos of all the girls on the big screen and saying ‘oh my, that’s what Bonnie has’,” Ginny said. “It was a relief that we finally had a name for our Bonnie’s problem, but at the same time, as a parent your heart drops with sadness to discover your child has a rare genetic disease that no one really knows about.”

Rett Syndrome is a rare developmental disorder that can be recognized in infancy and seen almost always in girls, rarely in boys. This syndrome has been most often misdiagnosed as autism, cerebral palsy, or non-specific developmental delay. Rett’s occurs worldwide in 1 of every 10,000 to 23,000 female births. It also causes problems in brain function that are responsible for cognitive, sensory, emotional, motor and autonomic function. These complications can include learning, speech, sensory, mood, movement, breathing, cardiac function, and even chewing, swallowing, and digestion; certainly not an exciting diagnosis.

Despite learning Bonnie’s diagnosis, the Shelton’s forged ahead with more gusto and dedication to the movement for individuals and their families with developmental disabilities. Gordon continued to serve on the Arc of New Jersey Board, as well as SCARC’s Board of Trustees, lobbying for proper care and treatment for individuals with developmental disabilities and respite services for families and loved ones. At one point he served as President of the Arc of New Jersey. Gordon chaired many fundraisers for both agencies, working hard to raise much needed funds to continue the programs and services that are offered by organizations such as SCARC.

Over the last thirty-four years, Bonnie has been a part of a myriad of SCARC programs and services, including day camp, respite care, day programs, recreation outings and many other events that have enriched not only her life, but also the lives of those around her. SCARC was even responsible for an important milestone in Bonnie’s early childhood. She met and sat on Santa’s lap for the very first time at a SCARC Christmas party. Bonnie and her family haven’t missed a SCARC holiday party since.

Sadly, Gordon passed in 2009 and is missed by many in the community, his family and especially by his daughter, Bonnie. To honor and commemorate him and all his efforts in giving individuals with developmental disabilities a voice and strengthening the movement, SCARC Foundation Inc. has renamed their annual Walkathon the Gordon Shelton Walkathon. “Even though Gordon is no longer with us, the walkathon is a great reminder and tribute to him,” said Ginny. “When he first brought the idea of the walkathon to SCARC back in 2002, we never imagined they would name this wonderful event after him.”

The Shelton’s journey with SCARC is far from over. Bonnie and Ginny will continue to utilize the programs and services offered by SCARC, and eventually Ginny will use SCARC Guardianship Services, a sister organization of SCARC, to care for Bonnie when she is no longer able to assume those responsibilities.

“I can go on and on about SCARC, our involvement with SCARC and how it’s changed our lives,” Ginny says with pleasure. “God bless this organization!”

Latest News & Upcoming Events

SCARC Receives UPS Foundation Grant
Dr. Richard Lecher, President and CEO of SCARC, Inc., announces that the SCARC organization has received a grant of $10,000 from the UPS Foundation of Atlanta, Georgia.
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2017 Gordon Shelton Memorial Walk-a-Thon
Gordon Shelton Memorial Walk-A-Thon Sussex County Fair Grounds May 21, 2017 - 11AM-3PM http://scarcwalk2017.kintera.org
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