Editor’s Note: Stephen Kimbriel, the father of Sawyer Kimbriel, is a native of Blaine and a 1999 graduate of Indianola Academy.
It took doctors almost all of Sawyer Kimbriel’s 8 years to figure out why he wasn’t gaining weight like he should, why he would only want to eat “crunchy carbs” such as Cheerios, and why fluid kept building up in his chest.
Their diagnostic difficulties, it turns out, were not all that surprising. Sawyer has an exceedingly rare, life-threatening ailment, one that only about 10 other children in the entire world have, his mother has been told.
Since early August, Sawyer and his parents, Jennifer and Stephen Kimbriel, and his younger brother, Swayze, have been living in Philadelphia, Pennsylvania, where Sawyer is being treated for central conducting lymphatic anomaly at Children’s Hospital of Philadelphia.
It’s been a difficult time for the young family, which is connected to Greenwood through Jennifer. A 1999 graduate of Pillow Academy, she is the daughter of James and June Kenwright.
Friends of the family have banded together to raise money for the Kimbriels through a raffle that had already sold about $5,000 worth of chances in just its first two days.
“We’re just really thankful to have some help,” said Jennifer Kimbriel from Sawyer’s hospital room Friday. “Just very appreciative. Thankful for the prayers and just all the support we’re getting.”
In layman’s terms, central conducting lymphatic anomaly means that Sawyer’s lymphatic system — the network of tissues and organs that help rid the body of toxins, waste and other unwanted materials — “flows backward,” Kimbriel said.
This negatively affects other organs — for years he has suffered from breathing problems that were misdiagnosed as asthma — and has created numerous tiny leaks throughout his lymphatic system.
His condition got so dire early this year that it took Sawyer and his family on a series of hospitalizations and surgeries — first at Children’s of Alabama, near their home in Hoover; then at the Mayo Clinic in Rochester, Minnesota; then back to Children’s of Alabama; and finally at Children’s Hospital of Philadelphia, where he is being cared for by a lymphatic specialist, Dr. Yoab Dori.
Kimbriel said Dori is pioneering a technique, not yet approved by the U.S. Food and Drug Administration, that locates the leaks in the lymphatic system, which then doctors can try to plug with a glue-like substance.
Initially, Kimbriel said, the family was hoping that there would be a “simple, little leak” that could be patched and Sawyer could be sent home. No such luck.
“He doesn’t have just one leak but hundreds of leaks throughout his whole system,” his mother said.
Sawyer has had seven surgeries so far this year, three in Philadelphia to try to plug the leaks in stages. The procedure takes about nine hours.
“It’s a long sedation,” Kimbriel said. “The recovery from the sedation is hard. The recovery from the procedure is hard because it’s very painful.”
Sawyer has not had anything to eat or drink by mouth for the two weeks since his last surgery. He has been getting all of his nutrition by IV, although the hospital is hoping to start on Saturday gradually introducing food through the permanent feeding tube in his abdomen.
Sawyer has good days and bad days, his mother said.
“He’s struggled a little with his mood some days. But most of the time, he’s your happy, typical 8-year-old boy.
“It’s hard. It’s definitely hard. It’s a lot to go through for a kid.”
Sawyer has put on a little weight to where he now falls in the third percentile on the growth curve, meaning that 97 percent of children his age are taller and weigh more than he does. By comparison, his brother, Swayze, an average-sized kid, is 19 months younger but weighs 10 pounds more. Still, that’s progress. Sawyer wasn’t on the growth charts at all a few weeks ago.
The family has been staying in Philadelphia at a Ronald McDonald House. One parent stays there with Swayze, the other at the hospital with Sawyer.
Stephen Kimbriel, the father, is able to work remotely as a senior financial analyst for a mail-order pharmacy. Jennifer Kimbriel stopped working three years ago as a dental hygienist so they could keep Sawyer at home, away from other children’s germs, since his immune system is compromised, and from foods to which he’s severely allergic.
“Sending him to school always kind of worried us,” she said.
The boys are home-schooled. Swayze’s in first grade, and Sawyer is almost ready to start third-grade material.
The specialized care and the kid-friendly staff in Philadelphia have been wonderful, Kimbriel said. Still, living the hospital life for the past four months, including the time at Mayo and the Birmingham hospital, has been emotionally and financially taxing.
“We’re all homesick. We miss our dog,” she said, referring to Chloe, a Goldendoodle puppy the boys got at Easter.
“I think that’s been Sawyer’s biggest complaint, missing her,” said Kimbriel.
The family doesn’t know how soon they will be able to come home. They’re hoping by Christmas.
Meanwhile their medical debt is rising, even with their insurance coverage.
Kimbriel estimates that by the end of the year, they’ll owe $40,000 to $50,000, if the insurer declines to cover the $20,000 cost for the eight weeks of outpatient feeding therapy Sawyer will need once his condition is stable enough to be discharged.
“It’s a good thing that we don’t have other debts,” Kimbriel said.
Grace Whites has been following Sawyer’s story on a Facebook page, named “Prayers and Support for Sawyer,” which his mother created.
The Greenwood mother of three and grandmother of four could relate to the Kimbriel family’s ordeal.
Her first child, Josh, now 37, was born with hemophilia and was in and out of the hospital for the first six years of his life.
Whites also has known the Kenwright family for some time. Jennifer Kimbriel and Josh are about the same age, and Whites was in a bunco group with June Kenwright, Jennifer’s mother, for several years. Also Jennifer’s aunt and uncle, Kathy and Chuck Jackson, have been longtime neighbors of the Whiteses.
“I just felt the Lord wanted me to do something for (Sawyer). They’ve been through so much,” Whites said. “I know from having Josh, so many things were wrong with him at first, how much it helps to have a hometown that shows that it cares and is praying for you.”
To raise money for the Kimbriels, Whites and others are selling raffle tickets for a chance to win one of three choice beef tenderloins (value $130 each) being donated by Mississippi Meat Co., a new business in which Whites’ youngest son, Caleb, is a partner.
They started selling the $10 raffle tickets on Wednesday through word of mouth and social media, and already the first printing of 500 was gone by Friday.
Caleb Whites said the raffle’s organizers are hoping to sell 1,500 to 2,000 tickets in all before the winning names are drawn on Nov. 22.
“None of us can really fathom what that family is going through,” he said. “The only way we can kind of help or help them focus on other things is for us to help financially.”
Something for Sawyer
A raffle is being held to benefit the family of Sawyer Kimbriel, an 8-year-old boy who is hospitalized with a rare lymphatic disorder in Philadelphia, Pennsylvania.
Tickets are $10 each or $100 for a book of 10 for a chance at winning one of three choice tenderloins (value $130 each) from Mississippi Meat Co.
Tickets can be purchased by calling Grace Whites at 662-392-3683 or Terry Grantham, who works at the Greenwood-Leflore County Chamber of Commerce, at 662-453-4152; or in person at Mississippi Meat Co., 114 W. Claiborne Ave., from 3 to 6 p.m. Fridays or 9 a.m. to 3 p.m. Saturdays.
Winning names will be drawn Nov. 22.
