'Her chance at childhood' - 9-year-old ballet dancer receives liver transplant, role in 'The Nutcracker'

After watching the Columbus Ballet's annual performance of "The Nutcracker" last year, Hadley Schoenborn told her mother, Jillian, "I want to do that."

Jillian registered Hadley, now 9, for ballet class, and she added it to her other activities, such as soccer, like any other busy child. Hadley, however, isn't an ordinary third-grader.

She has gone through an extraordinary journey, which culminated in a liver transplant three months ago and will be celebrated on stage Dec. 12 and 13 if she is healthy enough to perform in the Columbus Ballet's 2015 edition of "The Nutcracker" at the RiverCenter for the Performing Arts.

"This is our chance at life," Jillian said, "and her chance at a childhood."

Seemingly healthy

Hadley was seemingly healthy when she was born in August 2006. But during her two-month checkup, the pediatrician was concerned about Hadley's jaundiced skin and pale stools.

Several tests resulted in the diagnosis: biliary atresia, a rare liver disease affecting approximately one out of every 18,000 infants, according to the National Institutes of Health. Biliary atresia inflames the bile ducts and blocks the digestive fluid from reaching the small intestine, where it helps to digest fats. The buildup of bile poisons the liver and can be fatal.

Hadley had a life-saving surgery, the Kasai procedure. A portion of the patient's small intestine is used to form a new bile duct. Three months later, Hadley had two more surgeries, including a Broviac catheter, which enabled her to receive antibiotics every four hours.

In May 2007, Hadley was treated for seven days to combat a blood infection, and her catheter was removed. A liver infection in 2011 forced her to miss four months of school, so she repeated kindergarten.

Then this summer, because of declining health, Hadley was listed for a liver transplant. Chicken pox temporarily took her off the list, but Hadley recovered and finally was scheduled for surgery Sept. 13 in Children's Healthcare of Atlanta at Egleston. Jillian video-recorded Hadley's reaction to the joyful news:

Jillian: "We just got a call, and we're going to get a new liver tonight."

Hadley, playing on the carpet and wearing a Columbus Ballet T-shirt: "Really?"

Jillian: "For real."

Hadley paused for few seconds and beamed a big smile: "Really, Mom?"

Jillian: "Really! How do you feel about that?"

Hadley: "Excited!"

Jillian: "Yay!"

Hadley: "But I'm going to miss my friends."

YouTube star

Jillian created a YouTube channel for Hadley, where she posts videos that give advice and hope to other children waiting for or recovering from a transplant. For example, before she was wheeled into surgery, a giggling Hadley said she was given medicine that "makes you silly and sleepy." Her mother asked, "Is there anything to be afraid of?" And she smiled and replied simply, "No."

After a follow-up surgery two days later because of a blood clot and six days in the pediatric intensive care unit, Hadley returned home Sept. 23. Her recovery has been a series of complications and further hospitalizations, but Hadley and her family remain optimistic and thankful for the new liver she nicknamed Sunrise - the organ that gave her life new days.

Hadley's donor is anonymous, but if she could speak to the donor's family members, Hadley said, this is what she would tell them about receiving the liver: "Thank you very much. I love her, and I'm happy to have it."

"Words aren't enough," Jillian said. She wants to write the family a letter, which the donor bank would relay, "but I'm still composing it in my head. It's hard to thank somebody for life when they lost something so precious. Our family knows what that feels like. I know what they don't have, and it hurts."

On Oct. 24, Dan's father, Leonard Schoenborn, 66, died from an accident while cutting a tree down at home in Michigan. He was on a ladder. A branch hit him. He fell on his head.

"We had him on life support while they prepared to take all his organs," Jillian said.

So a month after receiving a transplant, the Schoenborn family was on the other side of the organ donation gift.

Jillian told Hadley, "Somebody is so happy that they have a piece of Grandpa, because they have their loved ones for Thanksgiving. So this Nutcracker is so much more than just our daughter being alive."

Lisa Carter, the Columbus Ballet's director called Hadley "an amazing kid, who, to my mind, wants this all to be behind her so that she can soar and get on with all the things she wants to do with her life."

Carter added, "For me, it will be the best gift ever to see Hadley up on that stage performing this year, knowing what she and her family have been through."

Liver sister

Besides attracting hundreds of views, the YouTube videos also led to Hadley gaining a friend, Emma, a girl from North Carolina. Hadley has helped guide Emma through her liver transplant.

"They FaceTime every night, talking about transplant stuff and normal girl stuff," Jillian said. "Meeting Emma has made it all worth it. There have been others that have also reached out and let Hadley know how helpful she is. Emma is her liver sister."

In addition to Hadley, Jillian and Dan, a gastroenterologist, have a 10-year-old son, Jackson, and daughters Nola Belle, 5, and Tayah, 4.

Jillian's posts on the Facebook page "Hope for Hadley's Adventure with Biliary Atresia," also have garnered attention and support from adults. The day before Hadley was hospitalized Nov. 27 because of a setback, Shannon Probst wrote, "I know I don't know you and you don't know me, but somehow I am following your story and I want you to know I am praying for you and your family! Thanks for sharing your journey. I firmly believe in the power of prayer. Your Hadley is such a strong young lady. She has made an impression on my life and I will continue to join you in prayer for this sweet girl!"

Hadley was diagnosed with sepsis, the body's life-threatening inflammatory response to an infection spread throughout the bloodstream. Despite being admitted to the PICU at Egleston, Hadley is smiling in the photo attached to Jillian's Nov. 28 post.

"She wanted to show everyone what a fighter she is in this picture," Jillian wrote. "This girl amazes me beyond words. Life has been so difficult for her and she keeps going!"

Six-and-a-half hours later, at the end of what Jillian called "the most intense day I've ever experienced in my life," the mother wrote, "My heart aches for Hadley and all that she has endured these last few months. Thank you all for the thoughts, prayers and messages! Your support moves mountains! We appreciate each of you! Her awesome liver sister, Emma, sent her a (stuffed toy) penguin and a singing balloon that brightened her stormy day!"

Antibiotics, combined with Hadley's spirit, rallied her outlook. Asked whether Hadley still will be on the RiverCenter stage, Jillian texted the L-E Monday, "It's a day to day thing, but right now she is up and laughing and bouncing off the walls. So the answer is yes, as of right now, she'll be in the Nutcracker!"

And if you go to the show and want to see Hadley, don't be late. Her role as one of the "party girls" is in the opening scene.

Mark Rice, 706-576-6272. Follow him on Twitter@MarkRiceLE.

IF YOU GO

What: Columbus Ballet's annual production of "The Nutcracker"

When: Dec. 12 at 7:30 p.m.; Dec. 13 at 2:30 p.m.

Where: RiverCenter for the Performing Arts, 900 Broadway

Tickets: Box office open Mondays-Fridays 10 a.m. to 5:30 p.m. and one hour before showtime; also available at rivercenter.org; prices $20-$32

Info: 706-256-3612

This story was originally published December 6, 2015 at 12:00 AM with the headline "'Her chance at childhood' - 9-year-old ballet dancer receives liver transplant, role in 'The Nutcracker' ."