WAKE VILLAGE, Texas (AP) - At 9 years old, Ryan Jackson has already experienced some of the most difficult moments life has to offer.
When he was an infant, his mother, Raven White, got a call she never expected. Ryan was diagnosed with sickle cell disease, a hereditary condition that leaves patients without enough healthy red blood cells to carry adequate oxygen throughout the body.
“When babies are born, they test them at birth. They called me back when he was 3 months old and told me,” White told the Texarkana Gazette (https://bit.ly/1KQnYlp). “I had heard about it (sickle cell), having been a nurse, but I didn’t know a whole lot of the details like I do now. Like any mother hearing that about their child, I was a little devastated. Life expectancy for people who have this is in the 30s or 40s, so they don’t live a full life. That was a hard pill to swallow.”
Thankfully, Ryan had no problems in infancy.
“The trouble didn’t start until he was 6 or 7. That’s when he started having crises,” said White, a registered nurse.
Those with sickle cell disease have red blood cells that are shaped like a sickle or crescent moon and become rigid and sticky. The sickle cells are fragile, break easily and die, which affects the number of red blood cells a person has. A normal red blood cell usually lives about 120 days. In a person with sickle cell disease, cells live on average less than 20 days.
Because the cells are sticky, they can get stuck in small blood vessels and block blood flow to areas of the body. Blocked blood flow results in crises, or episodes of severe pain, which last a few hours to a few weeks.
“Over the years, he’s had pain crises on and off, and we’re talking about severe pain. It will normally affect an arm or leg, sometimes his stomach,” White said.
Ryan, an avid baseball player and sports lover, has been sidelined because of the disease.
“Baseball is his favorite. He started playing when he was 5 and played for three years. He even played select ball, and he did really good,” White said. “Year before last, he underwent hip surgery. He had a crisis that decreased blood flow to his right hip. . They’ve taken him off sports, and that’s the worst thing for a kid. Until his hip issue is resolved, he can’t play sports, so having to watch his brother play baseball, he’s having a fit about that. Right now, he doesn’t feel any pain. He feels fine, so he wonders why he can’t play sports, but X-rays show there still isn’t blood circulation in his hip like there should be.”
Ryan’s sickle cell disease has also affected his schoolwork.
“He’s out of school a lot because of pain crises. He can’t be on his pain medication and go to school because he can’t focus. Last year, he had to repeat the second grade because he missed so much school and he was too far behind to catch up,” White said.
Frequent infections are another complication of the disease. To prevent illness, Ryan takes penicillin twice a day.
“A common cold could cause them to die, so he takes penicillin, vitamins and folic acid to build his blood levels,” White said.
September has been National Sickle Cell Awareness Month. Sickle cell disease affects about 90,000 to 100,000 Americans, according to the Centers for Disease Control and Prevention.
Because it’s not common, White feels her medical background helps Ryan get better care when he does have to go to the hospital.
“When we go to the hospital, most health care people know little about sickle cell disease. Because I’m an RN, it helps me be on the same level to communicate with them what they need to know to provide the best care for him,” White said.
The obstacles they’ve faced have made the family’s faith stronger.
“We believe in God. I just tell him to pray about it. This is just a minor setback for him, and every time he has a crisis, he asks me to pray for him,” White said. “As a mom, it is a lot to carry around. My faith is with the Lord, and I pray and meditate about it. I put his life in God’s hands. Statistics say one thing, but my God says something different. I just try not to worry about it. I want to enjoy as much time as I can with him. I’m not going to worry about tomorrow’s issues. Worrying about today’s problems is enough.”
Information from: Texarkana Gazette, https://www.texarkanagazette.com
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