Please join me in supporting Angelman Syndrome Foundation! This is my second time running the Chicago Marathon with the Windy City Angels and I could not be more proud to support this amazing foundation.
I am the mother to Lucy. A loving child with a rare genetic disorder. We went through a lengthy proces to determine the cause of her severe developmental delays. Along the way, it was mentioned to us by a neurologist that Lucy may have Angelman Syndrome. When we first read about Angelman Syndrome, it truly felt like we had discovered the cause of Lucy's delays and challenges. After further genetic testing, it was discovered that Lucy did not in fact have Angelman Syndrome, she had DDX3X. When we finally learned that Lucy had DDX3X, and not Angelman Syndrome, I had just about finished my fundraising for the 2019 Chicago Marathon for the Windy City Angels.
I was honored to be able meet several Angelman families at the premarathon dinner. Although, we knew that Lucy did not have Angelman Syndrome, we were still able to relate to and connect with many families that face similar challenges.
I decided to lace up my sneakers once again for the Windy City Angels for my sheer love of running and my desire to support ALL research into genetic disorders. Like DDX3X, Angelman Syndrome is a single gene mutation. Gene therapy is a rapidly growing field. Any information gained in this field of study, can potentially benefit other genetic disorders.