Ruby is one of about 100 people (mostly kids) worldwide with this rare genetic deletion known only as Xq27.3-q28 Gene Deletion. Funding for this research is incredibly important for families like ours. We have so many unanswered questions and hope that one day, we'll have a little more knowledge of what the future holds for Ruby and other kids affected by rare chromosome disorders. Through research, Ruby has also been diagnosed with Fragile X Syndrome and Autism Spectrum Disorder.

Ruby has to work so much harder than typical kids at even the most simple of tasks. Even so, she joined an all-girls soccer league (big fan of women’s sports), took hockey lessons (she loves wearing the gear), and even got to skate with her favorite OSU Women's Hockey Team, whom Ruby affectionately calls "The Ladies". We are so proud of her determination, despite all of these activities being quite physically, cognitively, and emotionally challenging for Ruby.

Please take a moment to check out XtraordinaryJOY.org and the wonderful activities they sponsor, as well as the incredibly important research they fund. The hope, support, and community created by this organization grows every year. If you are able to donate, we would be so grateful! Every little bit helps.