By BECKY KISER
Hays Post
After dealing with a rare genetic fibrosis of the liver—Caroli's Syndrome —since he was 2 years old, 13-year-old Liam Edwards of Hays was on a liver transplant list for just six days.
Liam was evaluated in mid-March to see if he was a good candidate for a liver transplant and what kind of support he would need.
He was approved for the wait list by Children's Mercy Hospital in Kansas City on April 20 and was offered a donor liver on April 26.
On May 7, 11 days later, Liam was discharged from the hospital after successful transplant surgery.
His parents, Ashley and Ian Edwards, both nurses, were astounded at how quickly the process went.
"He got through it like a champ," said Liam's mother, Ashley.
"They told us to be ready, that Kansas City Children's Mercy Hospital is the fastest moving transplant list in the United States, but I don't think six days is enough time to get fully ready," she said.
The welcome phone call came after the Edwards had returned home from church. Their reaction, she said, was "Holy cow! There's so much that needs to get done and be taken care of."
"We'd been watching the disease progress for a long time. He was having procedures, and it had gotten to where it was affecting his heart, lungs, stomach, pretty much everything," Ashley said.
"Luckily, his dad and I are both nurses, so it was a little bit easier for us to manage than somebody who doesn't do anything in the medical field. It would be incredibly overwhelming for them."
The disease gradually slowed down Liam's day-to-day life.
"He wasn't able to keep up with his peers," Ashley said. "He wasn't as active as he wanted to be. That's when we started to notice and begin thinking it was time for a transplant because you don't want to inhibit a kid's quality of life."
Liam and his mom must stay in the Kansas City area through the end of the month to be near his medical team to monitor his new liver and his blood levels.
Then, if everything looks good, they'll return to Hays.
"Of course, he's recovering now. But he should have increased energy, and have better stamina. Things like riding a bike were getting difficult. He would get exhausted after riding his bike to school," Ashley said.
"We're hopeful that he'll feel better and want to do more and be able to do more."
His family started noticing a positive change last weekend.
"His old personality came back. Liam is definitely kind of a class clown. He's always giggling, laughing, cracking jokes," Ashley said.
"On Monday, he told us he finally felt like himself again. There for a while, he was pretty quiet, pretty stoic."
Ashley said Liam was very excited to be discharged on Tuesday.
Liam will return to Kansas City every month for checkups. Weekly blood draws and tests will continue for the rest of his life. He'll also have to take the anti-rejection drug Tacrolimus lifelong. It's an immunosuppression medication designed to teach his body not to reject its new liver.
Classes for USD 489 will have ended for the summer break before Liam returns to Hays.
Hays Middle School gave him a dispensation for the time he missed in his seventh-grade classes. Liam plans to return ready for the eighth grade this fall.
For now, Liam is immunocompromised.
He can't go out in public for eight weeks. He must wear a face mask when he is out and about and practice social distancing.
His mother said donations to a GoFundMe account started by his aunt Lindsey Patterson, along with other financial contributions toward Liam's liver transplant procedure, will go directly into a savings account for him.
"The purpose of that will be to pay for any medical bills [after insurance]. It will help pay for his medication and follow-up medical care," she said.
Liam and his family are grateful for the sacrifice made by the donor family.
"We think of that choice on their behalf that is going to impact us the rest of our lives," Ashley said.
"As a mom, you know that somebody else had the worst day of their life."
"It's something we've been wanting and needing for 11 years. It's kind of hard to put into words how thankful and excited we are. We're just overjoyed," she said.
"We hope through this process people realize how important it is that people donate their organs and to be a donor if possible."
Ashley and Ian Edwards are both organ donors.