Dad Loses 40 Pounds, Becomes Living Donor for Infant Son in Desperate Need of Liver Transplant

By Amanda Thomason January 10, 2020 at 3:53pm

Sean and Josie Kelley of West Almond, New York, have what many today would consider a “large” family of seven kids. The most recent additions are Silas and Sawyer — twins, just like Sean and his sister, Briana Kelley.

Three of the Kelley kids have a rare condition called Alagille Syndrome, which can affect the kidneys, heart, liver and skeletal system — among other things.

One of their children with the condition, 5-year-old Tristan, had heart surgery as a baby, according to Good Morning America. Their daughter, 11-year-old Meara, also suffers from itchy skin as a result of the condition.

But little Sawyer faced a severe consequence from the disorder: he needed a liver transplant.

“He needed a liver transplant because his liver had to compensate,” Dr. George Mazariegos with UPMC Children’s Hospital in Pittsburgh said. “Even at this early age, just over a year old, he really could not survive more than a month without a liver transplant.”

Once they realized that a transplant would be necessary, Sawyer’s family set out to ask the world for a donor.

“Sawyer is our youngest child, beating out twin brother Silas by two minutes for that honor,” the dad shared on Sept. 10. “He has a smile that melts our hearts and his cheeks beg to be kissed. His demeanor tends to be a bit serious but if you get him to laugh you will never forget the sound.”

“He also has Alagille Syndrome a genetic disorder that can affect multiple organ systems of the body including the liver, heart, skeleton, eyes, and kidneys. From birth he has been closely followed by teams of doctors in Rochester and Pittsburgh. Recent tests have shown a significant decrease in his liver function, and it is to the point where he will require a liver transplant.”

He wrote about all the work and medication it would take to get Sawyer healthy again, and also how they were looking for a living liver donor — something that is more feasible than other organ donations since livers do regrow.

“We hope by sharing our story that we will connect with people who may be interested in becoming a live donor and ultimately help save Sawyers life,” he concluded.

Sean’s sister Briana started a GoFundMe for the family, and others helped out with fundraisers and other endeavors to support the family during their time of trial.

Sean wanted to do as much as he could on his own, too, to ensure his son’s survival, which meant he wanted to be tested to determine if he was a match. But Sean was told he needed to lose 40 pounds to bring his body mass index down.

“There’s no reason that I can’t get down to the weight that I need to see if could I could be a match as well,” he said, according to GMA.

“I didn’t know if I would be a match for Sawyer or not, but to even go through the evaluation process I had to get my weight down to a certain point.”

Beginning his weight loss journey in August 2019, his wife helped keep him on the straight and narrow with gentle encouragement. By December, he lost the 40 pounds, got tested and received the call that he was a match.

‘‘Twas the night before transplant, when all through the hospital, not a parent was sleeping, not even a little,” Sean posted on Dec. 18. “The patient lay, still in his bed, while prayers and well wishes surrounded his head.”

“All the scans were complete, the bloodwork done / The surgeons stood ready, they’d start with the sun / Dad had the good liver, from which they’ll take just a sliver. / Mama stood vigil by the side of the bed / The love in her heart glowing a deep red.”

The surgery went well, and although there have still been a few hiccups along the way, the family is excited for the prospect of a healthier future for their son.

“Sawyer continues to slowly improve in the ICU, they have removed most of the drains that were put in place to take off all of the extra fluid in his body,” Sean posted in update on Friday. “They have also been decreasing his ventilator setting in hopes of removing that as well, he has done really good so far and is getting a little stronger every day.”

“His new liver is doing good and everyone remarks about how much better he looks. He still has a long road ahead but we are very encouraged by his progress.”

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