Produced by the Children’s Minnesota StoryCorps Legacy Team from interviews recorded by StoryCorps, which provides people of all ages with serious illness and their families the opportunity to record, preserve, and share their stories by partnering with organizations across the country, including hospitals and clinics, pediatric centers, disease specific organizations and others. Listen to stories about hemophilia and sickle cell disease below.
Ahmed, a 20 year old with severe factor VIII deficiency or hemophilia A, shares his experiences growing up with hemophilia. Here he shares his experiences growing up with one of the pediatric nurse practitioners, Jocelyn Bessette Gorlin. In the conversation, Ahmed highlights the importance of learning self infusion and attending camp.
Tommy and Austine’s story
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.
Jessica and Dusty’s story
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.
Theresa, Joe and Zach’s story
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.
Abby and Dylan’s story
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.
Amy and Johnathan’s story
Amy and Johnathan discuss the similarities and differences in raising their two sons — one with a hemophilia diagnosis and one without.
Kari and Andreas’s story
Kari and her 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.
Christina and TaQuilla’s story
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.
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.
Katie, Kristie and John’s story
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.
Stephanie, Jim and Nate’s story
Mother, father and son discuss their journey in Nate’s hemophilia diagnosis at birth. There was no history of hemophilia in the 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.
Robyn, Xavier and Dominic’s story
Mother Robyn reflects on her son’s difficult birth and diagnosis. Father shares his dreams for his son, and both parents share support for one another as they embark on this journey.
Tanner and Jason’s story
Jason is the primary caregiver of his teenage son, Tanner. Jason discusses his experience in raising a son with hemophilia – specifically in 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.
Jeanette, Brian and Jeremiah’s story
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.
Justin, Hawa and JJ’s story
Husband and wife work together to care for their son diagnosed with sickle cell, who undergoes a bone marrow transplant. Throughout their journey, they place faith in their religion and maintain hope.
Friend, Ephriam, interviews sickle cell patient, Matthew, about his experience growing up with sickle cell disease. Matthew reflects that he appreciates life despite his diagnosis, and that his faith gives him strength. Matthew does not let his diagnosis define him.
Patricia and Bjork’s story
Mother, Patricia, and daughter, Bjork, discuss the resilience rooted in sickle cell disease. Although sickle cell pain crises can be challenging, support from Children’s Minnesota has allowed for a strong bond to form between mother and daughter.
Blandine and Jalen’s stories
Teenage friends Blandine and Jalen discuss their individual and shared experiences with sickle cell. The two friends met at Children’s Minnesota and have shared a unique bond ever since.
Jalen, Anthony and Lenora’s story
Mother, Lenora interviews sons: Jalen and Anthony (TJ), both are diagnosed with sickle cell. Although the brothers share a diagnosis, their experiences differ broadly.
Tamara and Candice’s story
Mother, Candice, and daughter, Tamara, discuss the challenges sickle cell disease has presented, however they both stay rooted in their faith and also in their personal resilience values.
Ed Jenkins III and Ed Jenkins, Jr.’s story
Father and son discuss how sickle cell has impacted understanding of their family, and childhood experience.
Mary and Okuny’s story
Patients Mary and Okuny discuss their individual experiences with sickle cell and how it has impacted their outlook on life. They both believe that sickle cell can not be used as an excuse, but rather a source of resilience.
Oliver and Charlie’s story
Oliver discusses his experience with sickle cell, including triumphs and challenges. His mother, Charlie, discusses the support she has received through her family and Children’s Minnesota.
Precious and Joanna’s story
Mother and daughter highlight the normalcy of childhood despite a sickle cell diagnosis. Both mother and daughter receive support from family members.
Trevon and Rae’s story
Rae recounts her experiences in caring for her son with sickle cell. In the beginning, she remembers not knowing what questions to ask. Trevon sees himself as an advocate for those who do not have a voice in the sickle cell community.
Romel and Nicole’s story
Romel and Nicole discuss their experience with the Caribbean medical care system compared to the United States. They agree that the team at Children’s Minnesota has delivered outstanding care for their daughter, Daniella.
We wish to extend our thanks to the families who have shared their story here about the impact of living with hemophilia and sickle cell disease. We would also like to thank the many who worked on this project:
The Children’s Minnesota StoryCorps Legacy Team:
Eddie Gonzalez, Jocelyn Bessette Gorlin, Susan Kearney, Stephen Nelson, Margaret Heisel-Kurth, Stephanie Davis, Angela Blue, Elizabeth McDonough, Jill Swenson and Alisa Linne.
Special thanks to: Stephanie Moua, Hamdi Hussein, Sadia Farah, Fatima Ali, Caillyn Costello, Suzanne Lehman, Suzan Ulrich, D’Ann Urbaniak Lesch, Justin Nelson, Allison Albright, Marvin Holmes-Leopold, Jose Rodriguez and Mitch Hare.
Minneapolis Institute for Production and Recording: Jose Rodriguez and Mitch Hare.