When Shekea Lindsay of Tonawanda found out that her newborn daughter, MaKenzie, was born with sickle cell anemia, she was shocked. She knew she carried the trait for the inherited blood disorder, but her husband had been told erroneously that he did not.
“I was just like, ‘What are we gonna do?’ You think worst-case scenario when you think about all of those things,” Lindsay said. “And I just felt honestly, guilt. I felt so guilty, because here I passed something on to her.”
Sickle cell anemia, most common in people of African descent, warps the red blood cells into the shape of a sickle. It’s caused by a mutation in the gene that produces hemoglobin, which is the protein in red blood cells that carries oxygen.
Sickle-shaped red blood cells are less flexible and can get stuck in small blood vessels, blocking the flow of blood. This can lead to painful “sickle cell crisis” or “pain crisis” episodes. It can also cause low red blood cell count, organ damage, delayed growth and development, and an increased risk of infections.
When MaKenzie had her first pain crisis as a baby – with the swollen hands doctors told her parents to watch for – uneducated emergency room staff mistook the incident for child abuse and put MaKenzie’s arm in a sling. But a call to the doctor who has followed MaKenzie’s care since birth at what is now called Oishei Children’s Hospital cleared things up and got her the care she needed.
“I would like to see more awareness” about sickle cell, said Ma-
Kenzie, now 15.
As a child, life was filled with tough lessons for her. For example, MaKenzie didn’t understand that extreme temperatures can cause pain crises. All she knew was that she couldn’t jump in a cold pool and go swimming with her friends.
But over the years, MaKenzie learned how to take care of herself, manage her symptoms and become her own advocate. She’s now down to just one or two pain crises per year, and hasn’t had to stay overnight in the hospital for a long while.
“I make sure I eat healthy. I take my medicine every night. So if a pain crisis does happen, I usually manage it pretty well,” she said. “I don’t stay more than, like, three or four hours in a hospital if I have one.”
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There is no cure for sickle cell anemia, but treatments such as medications, oxygen therapy and bone marrow transplants can help manage symptoms and prevent complications. The disorder can shorten life expectancy, but many people live full and active lives with proper health care.
MaKenzie is, by far, one of those people. She fills her life with sports and activities, partaking in everything from dance and cheerleading to volleyball and flag football.
“When I was diagnosed, they told my parents I probably wouldn’t be as active as I am, maybe not even be able to play sports or anything at all,” Ma-
Kenzie said. “So now that I can participate, I take almost any opportunity to do a sport that I can.”
For her mom, Shekea, watching her only child thrive has been a dream come true.
“I just want her to live as full of a life as possible, to be as happy as possible, to chase all of her dreams,” she said.
One of those dreams is to go to college and become a nurse. Ma=
Kenzie has had plenty of experience with them and knows from her treatment at Oishei what makes a good one extra special.
“Somebody who’s being nice and positive and making sure (patients) have everything they need, making them comfortable and not scared,” she said. “I would never poke them multiple times or forget about the patient.”
She said she has learned from the best at Oishei.
“They’re comforting and caring people there, so I don’t mind when I go, because I know I’m going to be well taken care of, and they’re going to make sure I’m OK,” Ma-
Kenzie said.
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Samantha Christmann
News Business Reporter
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