Her mom says:
“Our daughter, Sarah, is simply a precious miracle. Born with a chromosome disorder – Partial Monosomy 6q27 and Partial Trisomy 18 q23 – that that makes her unique (no one else in the world has this diagnosis) has not stopped her from achieving great things. Her determination, aka stubbornness, has helped push her to reach many milestones (and much of my gray hair). We are grateful that over the years, we have found many resources through Early Intervention, private therapists, school teachers/therapists, and family connections made through support groups like C.I.T.Y of Support.
Sarah brings joy to anyone who takes the time to connect with her. Her smile lights up the room and she is known for her silly faces in photographs (think eyes closed and tongue sticking out). Sarah loves riding black horses, looking at family/school pictures, texting family about upcoming meetings, and painting on canvas. She is a fierce hugger, sneaky tickler, photographer, and huge jokester. Sarah has shown us to appreciate and focus on the simple things – taking a walk to the park, picking flowers, playing cards, and drawing.
As with many children, Sarah tend to take two steps forward and one step back. We often see her regress with skills right before we have a large developmental leap. Currently at 17, Sarah is facing several medical issues that potentially cause a lot of pain, but she is a trooper working through it with her therapists and teachers. At this point, we are focusing on the here and now by taking one day at a time without dwelling too much on what we cannot control. Currently that means trying to find ways to help our daughter be a flexible, independent, and moody teenager.” 🙂
