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Mobile, AL (WALA) — Chelsea Burns believes her son being named USA health’s miracle child will allow the family an opportunity to show us what living with sickle cell could look like.
“It opens the conversation for people when they’re in the checkout line. Now people will be looking up ‘what is sickle cell?’ and it’ll spread awareness.”
Landen Sylvester was diagnosed with the blood disorder at just two weeks old.
In his ten years he’s endured four surgeries and two brain operations with transfusions, treatments and doctors appointments sprinkled in.
Burns says, with sickle cell, something seemingly small can escalate quickly.
“Let’s say he runs a fever that’s an automatic 48 hours in the hospital to make sure he doesn’t have an infection or something coming on.”
Chelsea admits it can be hard, especially with another child who sees the struggles.
But for Landen’s older sister, Vera, that doesn’t take away from her view of how special her brother is.
“If he’s mad he won’t stay mad as long as, he’ll stay mad for three seconds then get right back happy and start back laughing.”
Chelsea says the biggest challenge is seeing her child sick.
“As a mother it can be heartbreaking especially when you don’t have all the answers or you don’t know but he’s blessed enough to have doctors by his side who, who know the answers, who know what to do and they know how to treat everything that goes on with him.”
In the beginning she feared telling Landen about his disease would put a crutch on him.
“I think for his age he’s very aware.”
As he gets older she’s introducing different aspects of the disease to him, guiding him in understanding what he’s going through.
At such a young age Landen’s energy is infectious.
“Landen is the type of child where you’ll find a note in his book bag from someone saying thank you for being nice to me, or you’re my best friend.”
At school they call him “smiley,” it doesn’t take much to see why.
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