Emma’s Story

Eighteen year old Emma Banner is just like any other high school student. She loves going to school dances, participating in extra-curricular activities such as Bocce, tennis or school plays. Because of Emma’s significant needs related to her rare genetic disorder, Kleefstra Syndrome (9q 34 Chromosome Deletion) and Cyclic Vomiting Syndrome, her opportunities to be with her peers often fell short, as it was limited to what the school would fund for her Instructional Assistant (IA) to attend. With two parents working fulltime and Emma’s teenage tendency of not wanting to do everything with her parents, her summer and weekend activities were dependent upon whether or not she was chosen for LISS (Low Intensity Support Services) funding that year so the family could pay support staff. Just shy of her eighteenth birthday, Emma was chosen to apply for the Comprehensive Waiver after being on the Waiting List as Crisis Prevention since 2009. She is now receiving Individual Support Services through the Arc of Frederick County. She and her family have been able to pull-in support staff and job coaches with whom Emma was already familiar.

Her current IA now supports Emma to volunteer at the concession stand at school sporting events and Emma is able to spend time with service dogs in training with the person who trained her service dog, Bud, as part of Canines for Companions. Through her iPad and sign language, Emma is mingling with her community in ways that are important to her! Emma’s mom is now able to attend involvement meetings at Emma’s school, whereas she was not able previously due to not having supervision for Emma at home. With having extra helping hands, Emma’s family has more time (and energy) to devote to advocating for Emma and helping to bridge connections for their daughter. Emma has a long list of things she wants to accomplish this summer and with her new supports in place, she’ll be able to do just that!