Additional Resources: For Parents & Patients

The Seven Summits
Available from https://saveonelife.net/book
Cost: $100

The Seven Summits photo book documents Chris Bombardier’s journey to become the first person with hemophilia to climb the Seven Summits, the tallest mountains on each of the seven continents. This coffee table book features stories from the climbs on each continent as well as a peek into what life is like with hemophilia around the world. Proceeds go to support Save One Life, Inc.

 

Dear Hemophilia: Finding Hope Through Chronic Illness

Cazandra Campos-MacDonald 2019
Available from Amazon.com

Tender, passionate, often humorous story told in letters written to hemophilia, as if the disorder were a person. Throughout her journey to handle first one son’s and then another’s diagnosis, treatment, and new way of life, the author leans on self-discovery, a great medical community, a supportive husband, her resilient children, and most of all, her faith.

 

The Gift of Experience II: Conversations with Parents About Hemophilia

Laura Gray, LICSW, Ziva Mann, and Allie Boutin
Boston Hemophilia Center 2014
amazon.com

Compilation of personal stories from parents and caregivers of hemophilia patients; offers insights into the daily life of raising a child with hemophilia.

 

Legacy: The Hemophilia of Yesterday

Matt Barkdull 2014
amazon.com

First published diaries of hemophilia, the true story
of a teenager with a passion for writing in a western farming community before World War II. He records his hopes, dreams of independence and romance, suffers excruciating pain, yet expresses profound faith.