She will cry from the pain, and there’s nothing that can be done about it.

Q: What is sickle cell anemia?

A: It’s a blood disorder common for African Americans and Native Americans. It affects people of minority. It’s caused by an inherited abnormal hemoglobin. The abnormal hemoglobin causes distorted (sickled) red blood cells. They are fragile and prone to rupture. The cells clump together, blocking small blood vessels. When the vessels get blocked, parts of the body are deprived oxygen causing severe pain to organs and tissues. SCA can cause pain in the chest, abdomen, arms, legs, joints, and bones. It can cause organs to enlarge, like the heart, liver, and spleen. It can cause tons of other medical conditions, such as heart attack, kidney infection, and bone infection.

Q: How did you find out your daughter had sickle cell?
A: It’s protocol to check African American babies in the hospital when they are born. That’s how we found out about it–through a blood test.

Q: What was your first thought when you received her diagnosis?
A: I was prepared. I didn’t want it to happen, but I knew there were people on her dad’s side that had/have it. So, I knew there was a chance she would have it, too. Her dad’s cousins, grandmother, and some uncles have it.

Q: How old was she when you told her about her illnesses?
A: Around a year old, she had her first episode. She had to be placed into the hospital, and I tried explaining to her what was going on and what all they would have to do for her. This is her normal life. She’s known from the get-go about it.

Q: How does she feel about having it?
A: She has accepted it.

Q: How often is she in the hospital?
A: She’s been in the hospital a lot since she was born. {{Knock on wood!}} We haven’t been in the hospital in around 3 months now. When she is hospitalized, it feels like she’s in there forever sometimes–maybe two or three weeks. They check her bone marrow, her spleen, and give antibiotics to help fight infections. Sickle Cell affects all of that.

Q: What are some of her symptoms?
A: Her main symptom is pain. She will start crying and complaining about aches in her bones. I can always tell when she’s having a flare up. She will rub her legs and not be very active–just sits around. I’ll ask her if she’s okay, and she will say yes, that she’s just got a little pain. And when it gets so bad she trembles, that’s when I know to call the doctor or take her to the hospital.

Q: Can you describe what the pain is like having sickle cell?
A: It’s a horrible pain. She compares it to a burning pain. She can’t walk because it’s too painful.

Q: How does one manage the pain?
A: She takes pain meds. Her pain medication is morphine. I wish there was something else she could take for it. It’s a very strong pain medication.

Q: How often are the flare ups?
A: Maybe twice a week. Some days she has them a lot. It’s always different. Some days, one minute she’s fine and the next she’s in pain. And then sometimes she is in pain for days.

Q: Does it ever interfere with school?
A: Yes. Last school year was okay, but the year before she was in the hospital a lot. She had a lot of school work to make up. And she had a lot of absences. You can show them the doctor notes, but if she misses to much school, she could fail. It doesn’t matter if I have notes from the doctor or not. It’s a headache we can’t control. We are thinking about home-schooling. There’s a lady I know who home-schools her daughter. I asked if she would help with my daughter, and she said yes.

Q: At this age, do her friends know? Are they supportive to her?
A: Yes. All her friends and teachers know she has it. They don’t treat her any differently.

Q: Who has been her biggest inspiration?
A: Her older cousin. She’s in her early fifties. She knows how to talk to her, how to teach her ways to cope with it. She looks up to her.

Q: What medication does she take for this condition?
A: She takes antibiotics and pain meds. When she has a episode, we take her to the doctor to change her meds. Sometimes she has to have a transfusion or her blood filtered. She’s had that done too many times to count. It normally takes an hour or two to clean her blood. She’s a strong person, but she’s just a kid.

Q: Do they have any side effects?
A: Her pain meds will put her to sleep, but other than that, not really.

Q: How have treatments changed in the last 20 years?
A: It’s changed a lot, I think. The old thinking was always that people lived shorter lives with sickle cell, but that isn’t true. Some do die at an early age due to sickle cell, but not everyone. You can live to be 30, 40, 60… It just depends. There’s more advanced treatment than there used to be 20+ years ago.

Q: Are there any programs you are a part of?
A: Yes. I am a sponsor for sickle cell anemia and autism. I’m with the Make-A-Wish Foundation. Make-A-Wish Foundation is my best friend. I love them. I also sponsor St. Jude. Every year we deliver presets to St. Jude’s hospital for children. I’m a strong believer in helping children. I love children. It hurts my heart to see them like that. I know what those parents are going through because I know what I go through when my child is sick. It’s heart-breaking to see those kids like that. She’s also a part of a Sickle Cell group of East Texas. I am not sure if they have a Facebook page. I also met with some parents here in our home town whose kids have it. We try to meet up at least once a month and do a picnic or something.

Q: How have these programs helped?
A: Through the Make-A-Wish Foundation, she had the opportunity to go to Florida last year. Next year, in 2018, hopefully, she will get to meet her favorite celebrity, Justin Bieber. She’s a Belieber. Lol. She’s also gone to the Dallas Cowboy Cheerleader mini camp. She goes again next week. They get to meet football players, cheerleaders, wear the uniform, learn cheers.

Q: Does she have a favorite player?
A: Not really. She likes all of them.

Q: Did she have a favorite cheerleader.
A: Yes. She LOVES Jasmine.

Q: How old is she now?
A: She’s 11.

Q: What are some of her goals?
A: The only thing she talks about is cheering and being a Dallas Cowboy Cheerleader. She watches the show Dallas Cowboy Cheerleaders: Making the Team. She’s met the coaches and has even taken a picture with them. It’s in her scrap book. She loves them. They have inspired her that she can do it. She can do anything she wants to do.

Q: How amazing would it be if she tries out to be a DCC in 8 years or so, and those same ladies are in charge? Surely they would remember her! It’s just 8 years.
A: That would be amazing. A dream come true for the both of us. I could retire! Lol. No. I’m just kidding. But that would be great for her!

Q: What about you as mom? How has it affected your life?
A: Seeing her like that breaks my heart. It’s taught me a lot. I wasn’t really prepared for it, but I knew the chances from her family tree. I worry about it a lot. Whether this may be her last episode. With SCA you never know when will be your last day. I hope to wake up one day and the whole sickle cell anemia is gone from her. But, in reality… I just hope she has a bright future. I hope she’s successful.

Q: Has it affected your other children?
A: My son has Autism/Aspergers syndrome. He knows she has SCA, and he’s understanding of her needs. He has his bad days, too. He gets it.

Q: What’s an example of how a bad day would go?
A: She’s constantly crying from the pain, and there’s nothing that can be done about it. She lays around the house rubbing her legs. She will tremble from the pain sometimes.

Q: And good days? How are they different?
A: She’s a completely normal kid on her good days.

Q: Is a child of sickle cell just like any other child? Do they have the same dreams and desires as every one else?
A: Yes. She has the same dreams as any other child. There is no way of telling from someone’s appearance that they have sickle cell. You wouldn’t know they had it just by looking. They run and play just like any other kid. There’s no learning disability from sickle cell, no deformity in appearance.

Q: What advice would you give a parent who has recently learned their child has sickle cell?
A: Join a group. Ask lots of questions. Get involved in a sickle cell organization. Try and find out as much as you can on the subject. Educate yourself. You’ll be okay. Don’t freak out. It’s not like it used to be.

Q: If someone would like to donate to an organization for sickle cell where could they go?
A: St. Judes. They help with sickle cell patients. It’s my favorite hospital. I love them!


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