Sickle Cell: Precious and Joanna’s story
About this episode
Mother and daughter highlight the normalcy of childhood despite a sickle cell diagnosis. Both mother and daughter receive support from family members.
- Support: Family
- Fears and challenges
Joanna: What do you like doing at school with your friends?
Precious: Playing with them.
Joanna: Do you have a best friend at school?
Joanna: You do? Do you like playing with her a lot?
Joanna: How many best friends do you have?
Joanna: Wow! That’s a lot of friends.
Precious: What things do we like to do together?
Joanna: We got our nails done together when you was four. When we got our nails polished. When we played Barbie dolls. When we watched the princess movie. We eat. When you helped me cook breakfast, that was special and we had fun doing it.
Precious: Where are your happy memories?
Joanna: When I first had you, and when you started walking, talking, crawling, playing. When you started getting bigger and bigger.
Precious: Do you remember when I was first told that I have the sickle cell?
Joanna: Yes. It was scary, because mommy didn’t know nothing about it. I was scared. I didn’t know what to do. I had to learn about it and read about it, and I had to come to the clinic. They had to show me things about how to give you your medicine. That was scary. Daddy knew some of the stuff, but mommy didn’t. Mommy had to learn about it as you got older and as you everyday.
Precious: Did he help you?
Joanna: Yes, somewhat he was there helping mommy.
Precious: What did he do?
Joanna: He was telling me about how it was like a pain you were going to have. How he helped give you your medicine. He helped take care of you. He brought you to the doctor sometimes.
Precious: Do you have any regrets?
Joanna: No. The only thing I just wish that you and your sister didn’t have to go through the sickle cell. That’s the only thing I hate, because it’s hard to have two kids at home with sickle cell.
Precious: Tell me about your happiest memory.
Joanna: Having you and your sisters in my life, giving birth to you and your sisters, and doing amazing things. When we go out to eat, go play, and when we do fun things outside at the park and you guys ride your bikes, and we go to grandma’s house and have barbeques, and you guys have sleepovers. All the amazing things, I try not to let your sickle cell stop you guys from doing anything. I want you to know that you can do everything all the other kids do even though you have sickle cell. How do you feel that your sister has sickle cell?
Joanna: Sad, because you know what kind of pain she has to go through because you went through it.
Joanna: And she’s only a baby.
Joanna: How do you feel about Tetriana’s helping you out a lot or Jessica’s there when you have your crisis, your big sister.
Joanna: Do that make you happy when she helps you?
Joanna: When she helps give you your medicine or when she helps rub your legs when you be in pain? How much do you love your big sister for helping you out so much, for being there for you?
Precious: A whole bunch.
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.