Vascular Anomalies Center | Patients Stories

The Vascular Anomalies Experience Journal

The Vascular Anomalies Experience Journal is a collection of stories, videos, and personal experiences from patients, families and providers describing life with a vascular anomaly. The Journal represents the vascular anomalies community's “collective wisdom,” and touches on all aspects of what it means to have a vascular anomaly. We invite you to visit and explore the Experience Journal.

Juan and his son Fredy, who was diagnosed with JNA

JUVENILE NASOPHARYNGEAL ANGIOFIBROMA
A father’s hope for his son’s life
When his son, Fredy, was diagnosed with a rare tumor called a juvenile nasopharyngeal angiofibroma (JNA), Juan placed all of his faith in his son's doctors. Today, what little is left of 15-year-old Fredy’s tumor — what couldn’t be safely removed — is closely medically managed.

Dan and Alex, both diagnosed with Gorham-Stout disease

GORHAM-STOUT DISEASE
Gorham-Stout disease: 12 years, two patients and one innovation
Dan and Alex, diagnosed 12 years apart with the rare bone disorder Gorham-Stout disease, had very different post-op experiences, thanks to new treatment options being studied by Boston Children’s physicians and researchers.

FIBRO-ADIPOSE VASCULAR ANOMALY (FAVA)
Traveling 2,700 miles to save Jesus’s arm
For most of his life, doctors told the Jesus Barradas family — who live in Veracruz, Mexico — that his fibro-adipose vascular anomaly (FAVA) was so severe that wouldn’t be able to keep his arm ... until he came to Boston Children's. 

Brielle, who was born with Sturge-Weber syndrome, peering over a fence

STURGE-WEBER SYNDROME
First a birthmark, then a rare-disease diagnosis
After Brielle was born with a port-wine birthmark, doctors said there was a chance she could have Sturge-Weber syndrome, which can cause dangerous seizures. Find out how Brielle is beating the the odds.

Ryan, who was born with Sturge-Weber Syndrome, pictured in a tuxedo

STURGE-WEBER SYNDROME
Ryan's story: Living with Sturge-Weber Syndrome
One in 10 children are born with a birthmark. In most cases it's harmless. In Ryan's case, it was a sign of a larger problem, a vascular and neurological anomaly called Sturge-Weber Syndrome. Learn how Ryan is balancing life with a rare disorder.

VEIN OF GALEN MALFORMATION
Rolensky’s story: Saving his heart by fixing his brain
When a young mother named Gerdline brought her 4-month-old son Rolensky to a hospital in Haiti, she had no idea that his heart was failing because of a one-in-a-million blood vessel malformation in his brain called a vein of Galen malformation.

Kollins, born with CLOVES syndrome, with his sisters

CLOVES SYNDROME
Our family’s story: Finding a second home after CLOVES diagnosis
Kollins was born in Wyoming with a bump under his arm. Soon after, his parents found out that their son's condition was much more complex than they had ever imagined — CLOVES syndrome, a condition discovered by Boston Children's. 

Riley, who has CLOVES syndrome

CLOVES SYNDROME
Do I have the strength to be a marathon parent?
Kristen Davis talks about the unique day-to-day trials and triumphs involved in raising her daughter Riley, who has rare vascular anomaly called CLOVES syndrome, and about the reasons why research matters to her family.

Caitlin, who was diagnosed with a hepatic hemangioma, holds a photo of Jeff, the deceased donor who saved her life

HEPATIC HEMANGIOMA
Caitlin's new liver
Within hours of her birth, it was clear that something was very wrong with Caitlin's liver. That something was a hepatic hemangioma. That means a benign tumor — made up of a mass of blood vessels — had grown in her liver.