Walker-Warburg Syndrome Awareness Ribbon

Introduction

My name is Christine McCollum. I am the mother to two beautiful girls. My oldest daughter is KaiLayna. She is a sweet, sensitive, and caring big sister. My youngest daughter is Tala. She is a snuggly, affectionate, and laid back little sister. KaiLayna and Tala have a close, special bond. KaiLayna loves to snuggle, hug, and kiss Tala all the time. Tala enjoys these affections until she has had enough. Here is a small glimpse into our lives.

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At 20 weeks pregnant, a routine ultrasound found Tala to have excess fluid on her brain. In finding this, I was referred to a specialist to investigate further. Prior to birth, Tala was found to have brain abnormalities, small eyes, and severe hydrocephalus. Due to these diagnoses, Tala was born at the St. Vincent Women's Hospital in Indianapolis, where a neonatal team of doctors delivered her via C-section. Tala was admitted straight to the NICU (neonatal intensive care unit). Tala was in the NICU for 30 days. During her stay in the NICU, Tala received several diagnoses, and genetic testing was completed. Tala was found to have Walker-Warburg Syndrome.

Walker-Warburg Syndrome (WWS) is a severe congenital muscular dystrophy. WWS affects an estimated 1 in 60,500 newborns worldwide. WWS can be caused by mutations in at least a dozen genes. WWS affects development of the muscles, brain, and eyes. It is the most severe of a group of genetic conditions which cause muscle weakness and wasting (atrophy) beginning very early in life. There is no cure for WWS and affects every child differently. Because of the severity of the problems caused by Walker-Warburg Syndrome, most affected individuals do not survive past age 3.

There is currently not an awareness ribbon specific to Walker-Warburg Syndrome. My goal is to change that. With a rare diagnosis, limited time frames together, and many medical complications, small victories, small goals are truly important to our family and the community of WWS at large. My family created a ribbon to use as the official ribbon for WWS. It has been used online in the Walker-Warburg Syndrome Group for parents and on our private Facebook pages, as well as decals for our vehicles, shirts, and Facebook photo frames. The ribbon was designed with specific colors and prints in an attempt to include as many of the affected individuals and families as possible. There are 2 blue colors (light blue and navy blue), one representing hydrocephalus, the other representing brain malformations. The zebra print represents rare disease.

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With a diagnosis that is grim and overwhelming, it was necessary to find hope in other ways. Instead of hoping for specific developmental milestones, physical actions, or things we can "do," as a family, we look for experiences to share in together. I created a list of adventures for my daughters to experience together and for us to experience as a family. Creating a ribbon that is inclusive to individuals and families affected by WWS is on that list. Having a ribbon specific to a diagnosis is important to us in a community where we feel isolated and alone in many ways.

As a parent, my goal is to teach my children to love like Jesus, advocate for themselves and others, show empathy in words and actions, and be present in life. This ribbon is a way to advocate for my daughter, and every affected family of Walker-Warburg Syndrome. It allows others to show awareness by sharing in the ribbon and what it represents. Representation and inclusion matters!