A rare disorder changed Lexington girl's life forever

A rare disorder changed Lexington girl's life forever

LEXINGTON COUNTY, SC (WIS) - Two months ago, life drastically changed for a little girl in Lexington County.

In late January, 2-year-old Kenslie Shealy contracted a respiratory virus. She was admitted to Columbia hospital due to high blood pressure and a fast heart rate. She was quickly transferred to MUSC in Charleston for care.

"When we went to Charleston, the doctors had never really seen a case like that, " Danny Rawl, Kenslie's grandfather, said.

Doctors determined the little girl was born with a narrowed abdominal aorta. The rare condition limits the blood supply to her kidneys and puts strain on her heart.

Doctors at MUSC talked with doctors at Boston Children's Hospital in Massachusetts. A doctor at the Boston hospital had previous experience with treating the condition, so Kenslie's family decided Boston would be the best place for treatment.

In mid-February, Kenslie and her father flew to Boston. Kenslie's mother, Lori, stayed in South Carolina to give birth to a boy. Lori and the baby have since made their way to Massachusetts to be with Kenslie.

When Kenslie arrived in Boston, treatment began.

"They did do stretching of the aorta, putting a stent in it. That helped some. About a week later, they put another stent in," Rawl said.

A more complicated procedure might be needed, but doctors are trying less invasive procedures first.

"Her spirits are good right now. She still has a feeding tube, she still is having a little bit of trouble with holding stuff down in her stomach," Rawl said.

At this point, there's no timeline for when Kenslie could be back home.

"It could be weeks, it could be months yet," Rawl said.

With Kenslie's mom and dad both in Boston, family members in the Midlands are doing what they can to help.

"The husband is not able to work right now, " Diane Rawl, a cousin, said. "He's got to be with his family, and so they have no income coming in. They have medical bills, which of course, have skyrocketed."

A spaghetti benefit dinner, silent auction, and bake sale will raise money for the family.

"A situation like this can really make or break a family," Diane Rawl said. "This Lexington community is very, very helpful when people are in trouble."

The fundraiser will be Saturday, March 21 at Pisgah Lutheran Church from 4 p.m. to 8 p.m. The church is located at 1350 Pisgah Church Road in Lexington.

There are also other ways to donate to the Caring for Kenslie fund:

Visit any Wells Fargo bank location and donate in the name of "Kenslie Shealy Donation Fund."

Online donations are accepted at gofundme.com/LF0CUK

You can submit donations to:

St. Stephen's Lutheran Church

Caring for Kenslie Shealy Fund

119 N. Church Street

Lexington, SC 29072

Pisgah Lutheran Church

Caring for Kenslie Shealy Fund

1350 Pisgah Church Road

Lexington, SC 29072

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