Max Monroe doesn’t remember when he first experienced the problems associated with sickle cell disease – it’s something he’s had to live with his whole life. His parents, however, remember the devastating moment when they first learned about their son’s condition.
“I got a letter in the mail from the state of North Carolina letting us know Max had sickle cell – he was six weeks old,” Bettye said.
After getting blood work done, it was discovered that both Bettye and her husband Montae were carriers for the disease. They had no idea until that point.
Suddenly, their lives changed. Bettye didn’t return to work after maternity leave, knowing her youngest of three children would require constant parental supervision. He did pretty well for the first 10 months, and Bettye decided to go back to work in childcare. Max was put in a classroom next door so they would be close – but after contracting fevers from the other children and ending up in the hospital several times, Bettye stayed home with him until age four.
Max had his first pain crisis around age two. These occur when the body creates more sickled cells than normal cells, and they clog up in veins and arteries. For Max, his pain usually takes place in the stomach.
Sickle cell patients, like Max, typically need multiple transfusions throughout their lives. This adds more normally shaped cells into their body, helping prevent the pain episodes.
“The first time Max had to have a transfusion, we were totally freaked out. But once we saw how much better it made him feel…it’s like he would go from zero to 60 in no time,” said Bettye.
So far, Max, age 14, has had about 10 blood transfusions in his life. Bettye is thankful to Levine Children’s Hospital whose doctors have been so wonderful to the Monroe family. She’s also grateful for local blood donors who supply the blood that Max has received.
Recently, they’ve been able to manage the pain a little better, keeping Max from needing a blood transfusion for over a year.
Yet doctors’ appointments and pain episodes still kept Max out of school for a month this year.
Not only does Max have to miss a lot of school, and therefore make up a lot of work, he also has other restrictions on his childhood.
“Sickle cell makes it harder to do physical activity because I have to stay really hydrated,” Max said. “When I’m running around, I have to take a lot of pauses to get something to drink so I don’t end up with a pain crisis.”
He is also not allowed to play sports with heavy contact, like football. But Max stays positive and enjoys playing basketball, video games and hanging out with his friends. Math is his favorite subject, and despite missing so much school, he maintains an A-B average. Max will soon start his freshman year at Ardrey Kell High School – but if it weren’t for blood donors, he might not be here today.
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