We got a diagnosis of my daughter having sickle cell disease when she was two. She has SS. Back then, it wasn’t a whole lot known about sickle cell. We didn’t know at the time they were crises, but she would just all of a sudden start screaming and hollering for no apparent reason. We’d check her. She was dry. She was fed. Nothing out of the ordinary seemed to be a problem.
So we ended up going to her pediatrician and she said, “You’re just going through those new parent kinds of things. She’ll be fine.” It wasn’t until a friend of mine got his MD. He was going through his residency, and he opened up his shop. We were one of the first to go just to support him. He diagnosed my daughter. He took a CBC and he diagnosed her with sickle cell disease at two years old.
Well back then, you had to actually go into the library and read up on it. There was no internet back then.
I think she went to the University of Chicago. We got in touch with a hematologist, put her under there, and so just through talking to different people and learning about the disease. We hooked up with the Sickle Cell Disease Association of Illinois when she was…she must have been 12.
Well during that time, there was no hydroxyurea. The only thing that we could do was try to make her comfortable. The thing that made her comfortable was hot baths. You take a lot of hot baths. Rubbing her stomach, rubbing her arm, wherever the crisis was happening. Tried to get her mind off of it, talked to her about different things, and tried to encourage her. She went to church. She was very, very active. We just tried to keep her in a positive attitude. That really, really worked. God really helped us with that.
