Vascular Anomalies Center | Patients Stories

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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.

If you’re interested in sharing your or your family’s story, visit the Experience Journal submission page.

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.

Traveling 2,700 miles to save Jesus’s arm

For most of his life, doctors told Jesus Barradas' family 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.

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.

Rolensky’s story: Saving his heart by fixing his brain

When a young mother named Gerdline brought her four-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.

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. Kristen also wrote about the reasons why research matters to her family.

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.

We are grateful to have been ranked #1 on U.S. News & World Report's list of the best children's hospitals in the nation for the third year in a row, an honor we could not have achieved without the patients and families who inspire us to do our very best for them. Thanks to you, Boston Children's is a place where we can write the greatest children's stories ever told.”
- Sandra L. Fenwick, President and CEO

Boston Children's Hospital
300 Longwood Avenue, Boston, MA 02115
For Patients: 617-355-6000
For Referring Providers: 844-BCH-PEDS | 844-224-7337