Embark on a journey of hope, love, and community in our special one mile event dedicated to raising awareness and funds for pediatric Vascular Ehlers-Danlos Syndrome.

Brennen's Story

Brennen J. Goody was born with a genetic condition called Vascular Ehlers-Danlos Syndrome (vEDS), but because of its rarity, he did not receive a diagnosis until April 2021 when he was nearly 10 years old. He was fortunate to find out even then, based on the gut instinct of an urgent care doctor on a minor injury. Most individuals do not unless there is a known family history or only after a major medical event.

vEDS is a connective tissue disorder caused by a mutation of the collagen gene, which is the basic building block of almost all structures within the body. This meant that even though Brennen was an aspiring athlete with great talent and passion, his body was very fragile, and susceptible to injury. The visible symptoms were always there: the “double-jointedness”; the thin, stretchy, fragile skin easily bruised and torn - which led to many E.R. visits for stitches, staples, or glue - but was always chalked up to just “boys will be boys.” What wasn’t there until diagnosis was the knowledge of just how fragile his body was, despite the strength of his spirit.

Once his parents discovered the Why, they did everything possible to answer the How of taking care of him: close monitoring with specialists, medications, and proper physical precautions like avoiding contact sports (which was devastating to this naturally gifted and aspiring athlete).  June 13th,2023, he suffered a spontaneous aortic rupture just 8 days after his 12th birthday which doctors were unable to repair.  Brennen passed away.

Tragically, his death falls within known statistics. Various studies have shown:

The median survival age of individuals with a known diagnosis is 50 years

By age 20, a quarter of the known population experience a severe life-threatening complication

By age 40, that number jumps to 80%

Of 121 children tested, 65 presented with a major complication at an average of 11 years old

Males are three times more likely to die from complications before the age of 20

The intention of Brennen’s vEDS Walk is to raise awareness and fund research to challenge these statistics. Early diagnosis, close monitoring, and fast actions - both on the parts of individuals needing specialized immediate care and on the medical professionals tending to them - are key to survival.

This year's fundraising mission is being directed to Texas Children's. Why, you may ask?

Brennen has been added posthumously to Dr. Shaine Morris's study, focusing on vEDS in adolescents. As stated at https://www.texaschildrens.org/find.../shaine-morris-md-mph, her primary goal is “to prevent adverse outcomes in patients with aortic disease so that they can live long and healthy lives.” We hope that through our loss, we can help her help others.