![Storycorps a podcast series with Children's Minnesota](/assets/img/storycorps-headerv2.png)
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.
![storycorps_ahmed_300x300 Ahmed](/assets/img/storycorps_ahmed_300x300.jpg)
Ahmed’s story
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.
![storycorps_tommy_austine_300x300 Tommy & Austine](/assets/img/storycorps_tommy_austine_300x300.jpg)
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.
![storycorps_jesica_dusty_300x300 Jessica and Dusty](/assets/img/storycorps_jesica_dusty_300x300.jpg)
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.
![storycorps_theresa_joe_zach_300x300 Theresa, Joe and Zach](/assets/img/storycorps_theresa_joe_zach_300x300.jpg)
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.
![storycorps_abby_dylan_300x300 Abby and Dylan](/assets/img/storycorps_abby_dylan_300x300.jpg)
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.
![storycorps_amy_johnathan_300x300 Amy and Johnathan](/assets/img/storycorps_amy_johnathan_300x300.jpg)
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.
![storycorps_kari_andreas_300x300 Kari and Andreas](/assets/img/storycorps_kari_andreas_300x300.jpg)
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.
![storycorps_christina_taquilla_300x300 Christina and TaQuilla](/assets/img/storycorps_christina_taquilla_300x300.jpg)
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.
![storycorps_emily_300x300 Emily](/assets/img/storycorps_emily_300x300.jpg)
Emily’s story
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.
![storycorps_katie_kristie_john_300x300 Katie, Kristie and John](/assets/img/storycorps_katie_kristie_john_300x300.jpg)
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.
![storycorps_stephanie_jim_nate_300x300 Stephanie, Jim and Nate](/assets/img/storycorps_stephanie_jim_nate_300x300.jpg)
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.
![storycorps_robyn_xavier_dominic_300x300 Robyn, Xavier and Dominic](/assets/img/storycorps_robyn_xavier_dominic_300x300.jpg)
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.
![storycorps_tanner_jason_300x300 Tanner and Jason](/assets/img/storycorps_tanner_jason_300x300.jpg)
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.
![storycorps_jeanette_brian_jeremiah_300x300 Jeanette, Brian and Jeremiah](/assets/img/storycorps_jeanette_brian_jeremiah_300x300.jpg)
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.
![storycorps_justin_hawa_jj_300x300 Justin, Hawa and JJ](/assets/img/storycorps_justin_hawa_jj_300x300.jpg)
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.
![storycorps_matthew_300x300 Matthew](/assets/img/storycorps_matthew_300x300.jpg)
Matthew’s story
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.
![storycorps_patricia_bjork_300x300 Patricia and Bjork](/assets/img/storycorps_patricia_bjork_300x300.jpg)
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.
![storycorps_blandine_jalen_300x300 Blandine and Jalen](/assets/img/storycorps_blandine_jalen_300x300.jpg)
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.
![storycorps_jalen_anthony_lenora_300x300 Jalen, Anthony and Lenora](/assets/img/storycorps_jalen_anthony_lenora_300x300.jpg)
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.
![storycorps_tamara_candice_300x300 Tamara and Candice](/assets/img/storycorps_tamara_candice_300x300.jpg)
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.
![storycorps_ed_jenkins_III_ed_jenkins_jr_300x300 Ed Jenkins III and Ed Jenkins Jr.](/assets/img/storycorps_ed_jenkins_iii_ed_jenkins_jr_300x300.jpg)
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.
![storycorps_mary_okuny_300x300 Mary and Okuny](/assets/img/storycorps_mary_okuny_300x300.jpg)
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.
![storycorps_oliver_charlie_300x300 Oliver and Charlie](/assets/img/storycorps_oliver_charlie_300x300.jpg)
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.
![storycorps_precious_joanna_300x300 Precious and Joanna](/assets/img/storycorps_precious_joanna_300x300.jpg)
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.
![storycorps_trevon_rae_300x300 Trevon and Rae](/assets/img/storycorps_trevon_rae_300x300.jpg)
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.
![storycorps_romel_nicole_300x300 Romel and Nicole](/assets/img/storycorps_romel_nicole_300x300.jpg)
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.