Little Lakelyn Burns, diagnosed with congenital nephrotic syndrome, is ‘strongest, most resilient girl’

Her mom, Katie Burns, says when she heard Lakelyn cry after being born at 34 weeks it was, “the most precious sound I’ve ever heard.”
Lakelyn Burns was diagnosed with congenital nephrotic syndrome, a rare disease which affects...
Lakelyn Burns was diagnosed with congenital nephrotic syndrome, a rare disease which affects the kidneys.(Source: Family-submitted photo)
Published: Apr. 22, 2022 at 7:31 AM EDT
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CHARLOTTE, N.C. (WBTV) - Lakelyn Burns is nearly five months old, and lives in Shelby.

Her mom, Katie Burns, says when she heard Lakelyn cry after being born at 34 weeks it was, “the most precious sound I’ve ever heard.”

“We were originally told we’d only have to be in Levine Children’s Hospital for a few weeks,” Burns said. “But when she was six days old our lives were changed forever. We were told Lakelyn had congenital nephrotic syndrome. That’s a rare disease which affects the kidneys. It means my little girl leaks too much protein into her urine. Side effects include thyroid issues, malnutrition, blood clots, edema, increased risk of infections, and eventual kidney failure. She will need a kidney transplant within the next few years.”

It’s a lot to be told about your newest gift, only a few pounds old.

Since then, Lakelyn has undergone two surgeries. She is now at home but has to go to Charlotte three days a week for infusions.

“The next step in her treatment will be to have a nephrectomy (removing one kidney),” Burns said. “Later down the road, she’ll have to have her other kidney removed and start dialysis before a transplant. That could be two years from now, it could be five. We don’t know. Her condition is so rare so there isn’t lots of research on treatment.”

Those are the facts. The feels are as follows.

“I am so proud of Lakelyn,” said her mom. “She is the strongest, most resilient girl I know. I have faith, but there is a long road ahead. I want people to know about her and send good thoughts to us for our Lakelyn, to hope she makes it to transplant stage, then lives a somewhat normal life. I dream about the day she is running around outside with her two older sisters.”

Little Lakelyn Burns is seen with her two older sisters.
Little Lakelyn Burns is seen with her two older sisters.(Source: Family-submitted photo)

Thank you for sharing your girl with us, Katie.

Welcome, Lakelyn, to #MollysKids.

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