Support Baby Gus

A few months ago, our sweet baby Gus was diagnosed with a rare genetic condition called Williams Syndrome. I welcome you to take a moment to research and learn a little about this syndrome, but the spark notes version is this: William Syndrome (WS) is a rare disorder that affects 1 in 10,000 people. It is a randomly occurring, micro-deletion on chromosome 7 and occurs at conception. It comes with a variety of health challenges and can impact certain aspects of a child’s development. While each person diagnosed can experience unique symptoms, almost all kiddos diagnosed have an incredibly friendly and outgoing personality, an infectious smile, and a deep love for music.

While there are many, one of the health challenges most commonly associated with WS is heart issues. Unfortunately, Gus is experiencing severe heart issues that require immediate attention. He has a severe congenital heart defect called supravalvular aortic stenosis (SVAS), a condition where his aorta is narrowed just above the heart valve.

Gus’s medical team has determined that he needs to undergo open-heart surgery to patch the SVAS very soon. This will be the first of several surgeries that Gus will need to have. As you can imagine, this has been an emotional and challenging time for our family. We’ve taken time to grieve this diagnosis, have done countless hours of research, and have connected with some amazing families in the WS community (for whom I am eternally grateful). They have helped us connect with some of the top WS specialists and hospitals in the country to perform Gus’s surgery.

We don’t know what the future holds for Gus, but we do know these next few months will be hard ones as we travel to Stanford in California for Gus’s surgery. We are not sharing this because we want sympathy but because we need all of the positive thoughts, prayers, and support we can get. We want Gus to be surrounded by friends and family who recognize his extraordinary strengths and support him when he needs it most. We will keep everyone updated as our strong little guy faces this big challenge.

“Real superheroes live in the hearts of small children fighting big battles”

Gus’s medical journey is only just beginning. This surgery in California will be the first of several surgeries he will need to repair his heart. In terms of care, Stanford is the best of the best, but it also comes with a variety of associated costs for travel, housing, food, medical needs, time off, and more.

After hearing the news of Gus's medical journey we here at the Goddard School immediately want to find a way to help. First and foremost the family greatly appreciates everyone's continued prayers and support. Also as a community, we can come together to help reduce some of the unexpected expenses for Gus's journey. There is no gift to little and Gus, Nikki, and Charlie are forever grateful for how everyone is rallying behind their family.