Sickle cell victim, 4, will attend national health care program
By Travis Coleman Journal Staff Writer | Posted: Friday, February 29, 2008
SIOUX CITY -- While Malik Byrd dreams of being a superhero, some say his mother, La'Keshia Rainey, is the real thing.
Malik, 4, of Sioux City, was diagnosed with sickle cell anemia two weeks after being born. Rainey has since become a local advocate for sickle cell anemia research to get the best care for her son but also to help others.
Malik is now set to join 54 other children chosen by the Children's Miracle Network for their Champions Across America program. The announcement was made during a special presentation at St. Luke's Regional Medical Center Thursday.
He is the fourth Siouxland child chosen by the network to represent Iowa for the program since it began in 1989. In March the group will travel to Disney World in Orlando, Fla., and then to Washington D.C. to highlight the importance of children's health care.
"I don't know if he quite grasps it," said Megan Meyer, a network coordinator who has known Malik for two years. "He just knows he gets to go to Disney."
Rainey jokes that she is using the trip as leverage to get her son to clean his room.
Each of the 170 network hospitals can nominate at least one child for the program. From those, one is selected from each state to raise awareness of the 17 million children treated at network hospitals like St. Luke's.
Officials said Malik was a good candidate both because of his determination and that his mother has been building awareness on the disease for which there is no cure.
In sickle cell anemia, red blood cells form clumps and get stuck in blood vessels, causing pain, infection and organ damage. With good health care, people with sickle cell anemia can live near normal lives with a life expectancy between 40 and 50 years.
When Rainey was first told about her son's disease, she didn't believe it, a denial that lasted up to nine months. That gave way to her desire to find out more about the disease.
"I wanted to make sure I wasn't missing any gray areas," Rainey said.
After researching for a year, Rainey continued caring for him in their home. When he was in pain, she'd help him with massages and hot baths. Malik calls this "mommy pain," or when the aches aren't so bad.
When the pain is unbearable, it's "Marlys Pain" because he then has to go to St. Luke's to see his favorite nurse, Marlys. Then, he is be given morphine and sometimes a blood transfusion.
When he's feeling well, Malik is like any other 4-year-old: spunky and energetic. When he's feeling the symptoms of his disease, he's lethargic and lies on his mother's lap.
"Malik is a fighter," said Susan Unger, vice president of development in St. Luke's Health Foundation.
In addition, Rainey also helps advise the parents of an estimated 15 other sickle cell patients ranging in age from 5 to 19.
"His mother has been a very strong advocate for those with sickle cell anemia," Unger said.
Malik, 4, of Sioux City, was diagnosed with sickle cell anemia two weeks after being born. Rainey has since become a local advocate for sickle cell anemia research to get the best care for her son but also to help others.
Malik is now set to join 54 other children chosen by the Children's Miracle Network for their Champions Across America program. The announcement was made during a special presentation at St. Luke's Regional Medical Center Thursday.
He is the fourth Siouxland child chosen by the network to represent Iowa for the program since it began in 1989. In March the group will travel to Disney World in Orlando, Fla., and then to Washington D.C. to highlight the importance of children's health care.
"I don't know if he quite grasps it," said Megan Meyer, a network coordinator who has known Malik for two years. "He just knows he gets to go to Disney."
Rainey jokes that she is using the trip as leverage to get her son to clean his room.
Each of the 170 network hospitals can nominate at least one child for the program. From those, one is selected from each state to raise awareness of the 17 million children treated at network hospitals like St. Luke's.
Officials said Malik was a good candidate both because of his determination and that his mother has been building awareness on the disease for which there is no cure.
In sickle cell anemia, red blood cells form clumps and get stuck in blood vessels, causing pain, infection and organ damage. With good health care, people with sickle cell anemia can live near normal lives with a life expectancy between 40 and 50 years.
When Rainey was first told about her son's disease, she didn't believe it, a denial that lasted up to nine months. That gave way to her desire to find out more about the disease.
"I wanted to make sure I wasn't missing any gray areas," Rainey said.
After researching for a year, Rainey continued caring for him in their home. When he was in pain, she'd help him with massages and hot baths. Malik calls this "mommy pain," or when the aches aren't so bad.
When the pain is unbearable, it's "Marlys Pain" because he then has to go to St. Luke's to see his favorite nurse, Marlys. Then, he is be given morphine and sometimes a blood transfusion.
When he's feeling well, Malik is like any other 4-year-old: spunky and energetic. When he's feeling the symptoms of his disease, he's lethargic and lies on his mother's lap.
"Malik is a fighter," said Susan Unger, vice president of development in St. Luke's Health Foundation.
In addition, Rainey also helps advise the parents of an estimated 15 other sickle cell patients ranging in age from 5 to 19.
"His mother has been a very strong advocate for those with sickle cell anemia," Unger said.
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I support CMN wrote on Feb 29, 2008 2:30 AM: