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Awareness Resources

Books We Love

For Patients

Books About SWS and PWB

Here are a few SWF-recommended books that will help spread awareness and acceptance.

The Warrior Mama: Tidbits and Tales from the Trails by Karen Fisher Ball, SWF Founder, and CEO

When Karen's daughter was diagnosed at birth with SWS, few resources were available for families and caregivers. No support groups, guidebooks, websites, or even brochures on the complexities of this unique condition. A guide to living with SWS simply did not exist. In fact, many medical practitioners had no experience with diagnosing or treating children with SWS.

Inspired by faith and driven by determination, Karen blazed her own trail and created the Sturge-Weber Foundation to battle SWS. She embarked on a fundraising and research journey through the medical community and the pharmaceutical industry that has helped people worldwide.

Sturge-Weber Syndrome 2nd Revised ed. Edition

by John B. Bodensteiner (Editor), E. Steve MD Roach (Editor)
Sturge-Weber syndrome is an enigmatic disorder, seldom difficult to diagnose but often difficult to treat. This book consolidates what is known about the Sturge-Weber syndrome in the hope that this information will be useful in the care of patients and serve as a stimulus to encourage research on some of the remaining questions about the syndrome. This book is the 2nd Edition.

Beautifully Blemished children's book by Leanne Stuckey

Whether it's a birthmark, eczema, vitiligo, moles, scars, or other visible markings; it can be difficult to find the beauty in being different. Beautifully Blemished: Learning and Celebrating Skin Differences is a children's book that encourages children to see the unmatched beauty in their imperfections and provides an understanding of various skin conditions.

Having grown up with a visible skin difference, I understand the feelings of insecurity that come along with that reality. This book was written to help kids truly recognize the beauty in their uniqueness—hopefully much sooner than I did. The goal is to empower young boys & girls while spreading awareness and helping to shift society’s narrative of what beauty is and what it looks like.

Jaylon's Story: Living with Sturge-Weber Syndrome by Dietra Fleming

This story was meant to bring awareness to Sturge-Weber syndrome.

Our son Jaylon was diagnosed with Sturge-Weber when he was just four months old. At the time, we had never heard of Sturge-Weber, so it was pretty scary in the beginning. However, over the years, Jaylon has had some hurdles to overcome, but he is doing really well now. I hope that this book will inspire anyone dealing with any type of disorder to always think positively because they are amazing in every way!

Running The Coast For A Cure: One Man's Journey For His Niece With Sturge-Weber Syndrome by Al DeCesaris 

An extraordinary and inspirational journey to make a difference!

In 2014, Al DeCesaris set out on a 1,935-mile solo run from Lubec, Maine to Key Largo, Florida. He ran to bring hope to his 10-year-old niece Jenna who suffers from Sturge-Weber Syndrome, a rare and life-threatening neurological disorder. He ran to create awareness and raise funds for medical research so a cure can be found.

Falling Off the Chair at Logan Airport: A Father’s Journey with a Son with Sturge-Weber Syndrome by Zia Zaman 

“Falling Off the Chair at Logan Airport” is Zia Zaman's latest work, a combination memoir and parenting book that defies traditional genre stereotypes. It is the life story of a little boy with Sturge-Weber Syndrome told from the perspective of the father. As a book that helps other parents, caregivers, and health care professionals understand more about this particular orphan disease, it will strike an unusual chord as it is written from an analytical, left-brain perspective that most authors do not explore in their quest for answers. Also, as a memoir, it investigates the cycle of grief-analysis-acceptance delving into the concept of uncertainty and how much we as humans can and cannot do to control the big and little things in our children’s lives"