Six years ago, Ashland, Kentucky, resident Lacie Robinson graced the front cover of Bridges Magazine, Issue 44 (Summer/Fall.15) as a ten-year-old organ donor recipient. Six years later, we’ve caught up with Lacie and her family to find out how life has changed since receiving a donated liver on February 26, 2010. 

“I remember it like yesterday,” said Beth. “My older son Reese was playing outside on the swing set when Lacie began gurgling. I could see a dark substance coming out of her mouth and dripping onto her yellow dress.” 

Lacie was a mere 10 months old when the Robinsons found out their daughter was ill. It took physicians a while to figure out what was happening inside Lacie’s body, but after thorough testing and evaluation, she was diagnosed with Cryptogenic Cirrhosis – a type of liver disease. 
According to liver disease experts, less than 5% of children end up with this diagnosis. 
“Cryptogenic is a fancy term for ‘we don’t know why this kid has this disease’,” said Beth. “They tested her for everything coming-and-going, and at one point, she was a case study.” 
By age three, clinicians conducted Lacie’s first transplant evaluation, and by age four, she was placed on a transplant list. Then, at age five, Lacie took a turn for the worst and underwent transplant surgery to receive a new liver. 

At first, Lacie’s body rejected the new liver, but with a combination of specific medications, therapeutics, and close monitoring, her body began to finally accept the donated organ. 
“That first year was the roughest,” Beth recalls. “Lacie was starting kindergarten and there were still so many unknowns. We felt as if we were always holding our breath.” 

Because of the immune factors associated with Lacie’s condition, she was kept in isolation at first. She spent kindergarten and part of her first-grade year on homebound learning but has been able to attend in-person learning ever since.

Fast-forward to now, Lacie is a thriving 16-year-old junior at Boyd County High School. She is driving, playing volleyball, and is looking forward to college where she intends to pursue a career in the medical field. 

“When the doctors would do their early morning rounds, Lacie was always right there with them,” Beth said.

“I always wanted to know what was going on,” Lacie replied with a smile. “That’s one reason I believe I’ll be successful in a medical career,” she laughed. 

Despite the rough start, Lacie’s body has continued to thrive. 

These days there are no more pick-lines, no gobs of medication, and no more infusions to build up her immune system. Other than receiving routine blood work every three months and taking a few maintenance medications daily, Lacie is only required to see her doctor once a year. 

“I know she’ll be out on her own soon so we’re in the process of teaching Lacie the responsibilities associated with maintaining her health,” Beth said. “She’s learning about her medications, and her doctors are teaching her exactly what to say if she finds herself in the care of other medical providers or facilities.”

Now that Lacie is older, we asked her to detail a little more about her experience in her own words.

“During my transplant surgery, I vividly remember seeing a bright light,” Lacie describes. “I also remember trying to get up off the table but couldn’t.”

Lacie’s experience is like many others who have undergone intense times of physical illness and/or surgery. Experiencing events that seem surreal are more common than most realize.
Beth describes a beautiful moment occurring only a few months after the surgery. 

“Lacie was buckled in her car seat and said, ‘Momma isn’t Jesus sweet? He came to give me a kiss before my surgery so I wouldn’t be scared.’” 

The Robinsons maintain belief that God’s hand has been responsible for the events surrounding Lacie’s life. 

A year after surgery, they received a letter containing photos of 14-year-old Danielle Reinke, Lacie’s organ donor. The letters were from Danielle’s mother Lavonne. She wanted to meet Lacie. 

Two years later, the Robinsons made their first trip to Santa Claus, Indiana, to meet Danielle’s family and to participate in a special softball tournament held to commemorate her life. That year, the stadium hung a plaque for Danielle inside their dugout which reads Angel in the Dugout. 

“Lacie was asked to throw the first pitch,” Beth said. “It was such an honor for her to be a part of this special event. It was also the first of many trips to come.” 

Every year since, the Robinsons travel back to Santa Claus on Mother’s Day weekend to take part in Danielle’s Dash, an annual 5K held in her honor. 

“The whole town is just beautiful,” Beth shared. “It’s a blessing to be embraced by so many.” 
Several of Danielle’s organs brought life to others, but to date, Lacie is the only recipient Danielle’s family has met. 

In closing, we asked Beth what she’d love to communicate to other parents living with childhood illness. 

“We are not guaranteed another minute.” Beth said. “Appreciate every second, especially with your babies.”