On March 22, 2019, when our daughter Laila was just 2 months old, she was diagnosed with Williams syndrome. Aside from the complete shock of the diagnosis, my husband (John) and I were overwhelmed by the complexity of the syndrome as we had never heard of it and there seemed to be a long list of potential concerns and problems. We learned that Williams syndrome often has global impacts on individuals – medically, physically, and cognitively.
Since birth, Laila has had a robust team of specialists and therapists. She is thriving, and in no small part to the many people that we call Laila's League. Some of the members of her team include a geneticist, cardiologist, endocrinologist, nephrologist, gastroenterologist, otolaryngologist (ENT), audiologist, opthamologist, dentist, physical therapist, occupational therapist, speech pathologist, and feeding therapist.
Over the past few years, we have learned a tremendous amount about the syndrome, networked with similar families, and experienced the incredible gifts, joy, and blessings that having a child with Williams syndrome brings. Laila's smile is guaranteed to brighten anyone's day and people that meet her describe her as pure joy.
We are now 3 years later, and Laila has since become a big sister to a younger, neurotypical brother, Landon.
Like many other parents, I wondered how I would teach both of my children about Laila’s diagnosis. It’s not just about sharing her challenges and gifts, it’s also about instilling in my children the importance of acceptance, kindness, inclusion, and empathy - for all people. I knew the best way for me to do this was through a book.
I am so excited and eager to share this story and hope it will be the resource, literary representation, and educational tool that so many of us are searching for.