StoryCorps - Hemophilia

Mother, father and son discuss their individual and collaborative experiences in living with mild hemophilia. Support from Children’s Minnesota and their community has helped them the most. Faith has played a central role throughout the diagnosis process.

Jason is the primary caregiver of his teenage son, Tanner. Jason discusses his experience in raising a son with hemophilia – specifically his journey of having a port, and the support he has received from Children’s Minnesota. Tanner discusses that, sometimes, hemophilia is challenging because it limits the activities he can do with his friends. However, he loves going to camp, and still lives life to the fullest.

Mother reflects on her son’s difficult birth and diagnosis. Father shares his dreams for his son. Both parents share support for one another as they embark on this journey.

Stephanie, Jim and Nate discuss their journey in Nate’s hemophilia diagnosis at birth. There was no history of hemophilia in their family. Not only have they embraced his diagnosis, but see it as integral to their family. The Millers celebrate the resiliency that often comes with a lifelong, chronic diagnosis. Stephanie highlights the importance of the bond between siblings.

Twins Katie and Kristie discuss their family history of Von Willebrand’s Disease with their father, John. Katie and Kristie were diagnosed later in life, allowing for their complex family history to be explained. This diagnosis has both strengthened their family bond, and also provided a lesson in advocacy for each family member.

Emily discusses son Logan being diagnosed without a family history, due to circumcision bleeding. Emily discusses the support she and her husband have for one another.

Young mother, Christina, discusses her experience in raising her son who is diagnosed with hemophilia. She relies greatly on her cousin, TaQuilla, her mother, and Children’s Minnesota. She feels as though her son’s life is not limited by hemophilia, but rather enriched by it.

Kari and son, Andreas, discuss what it is like to receive prophy infusions. Kari discusses her journey to parenthood while being a carrier of an unknown, rare, hemophilia mutation. The importance of both community and marital support is valued by Kari.

Amy and Johnathan discuss the similarities and differences in raising their two sons - one with a hemophilia diagnosis and one without.

Parents Abby and Dylan discuss their experience with their son, Evan, and his diagnosis of Hemophilia A. As a couple, they have supported each other through the journey and have been empowered through the ability to do self infusions with Evan at home.

Theresa’s father died of hemophilia and she discusses what it is like to be raising a son with hemophilia. Her family history greatly impacts the way she cares for her son Zach. Zach and Theresa have a strong bond, that is strengthened by Zach’s hemophilia diagnosis.

Mostly about mother, Jessica’s, journey from her father having hemophilia and dying of it and how hemophilia has changed. Dusty, patient, discusses how he knows his limits and helps set up infusion kits. A beautiful and rich interview.

Tommy and Austine Berry discuss their experience raising their son, Grayson who was diagnosed with hemophilia after a subdural hematoma after delivery. They share their experiences about their son’s diagnosis and their support for one another. Tommy and Austine both agree they have strived to promote normalcy and experience joy throughout Grayson’s childhood.

Ahmed, a 20 year old with severe factor VIII deficiency or hemophilia A, shares his experiences growing up with hemophilia. In the conversation Ahmed highlights the importance of learning self infusion and attending camp.