In 2012, when Ashley was pregnant with her son Luka, she received devastating news about his heart health. Luka presented with hypoplastic left heart syndrome, a congenital heart condition in which the left side of the heart and aorta are very small or underdeveloped.
Ashley was told this condition could severely impact his overall health and quality of life, but she was ready to fight for him. Luka was fittingly born on World Heart Day, September 29, 2012, and was immediately transferred from UPMC Magee-Womens Hospital to UPMC Children's Hospital of Pittsburgh. Just days later, he underwent his first open-heart surgery.
He underwent additional heart surgeries in the years that followed, but once he was about seven years old, he started to really struggle.
“He just started getting really tired, didn’t have much energy, and couldn’t play a whole lot. It was constant doctor’s visits,” Ashley says. “It was discouraging for him not to be able to keep up with his brothers or peers, but he still kept a smile on his face and tried to do everything he could.”
His care team decided that Luka would require a heart transplant. From his time on the waitlist to undergoing the transplant procedure, the process was filled with a lot of emotions. However, they worked hard to keep a positive perspective as a family.
“We just thought about how, at the end of all of this, he’ll be able to run, play, ride his bike, and do all of the things he wanted to do for years but just couldn’t.”
In January 2024, after 92 days of her son on the waitlist, Ashley received the call that there was a new heart ready for Luka.
The clinical team provided clear communication and care every step of the way to ensure Luka felt supported throughout the surgical process.
“The recovery started out challenging, but they made sure his voice was heard and that he felt safe and comfortable,” Ashley says.
Now, with his new heart, Luka is able to live a life full of energy.
“He runs, rides his bike, plays. He just loves life now,” says Ashley.
Throughout the entire journey, it was never lost on Ashley that Luka’s second chance at life meant another family was grieving the loss of their own child. Just two years after his transplant, Luka was able to travel to Valley City, Kansas, to meet his donor’s family.
The Valley City community came together to help Ashley and her children make the trip to Kansas and welcomed them with open arms. Luka even had the chance to throw the first pitch at the local high school’s baseball game.
“It was incredible. It was healing for the both of us, as moms,” Ashley shares. “I wanted to know that she was ok despite losing her son and she needed to let me know that she was going to be ok.”
Luka’s donor’s mom expressed her gratitude that she got experience nine beautiful years with her son and that Ashley gets to experience life with her son in a way that she didn’t get to before. It brought her a sense of peace.
Ashley sympathizes with any parent who is helping a child through the transplant journey and is experiencing the emotions that come with it. Her advice to those parents is to live in the moment.
“Take it one day at a time. Don’t hold yourself back,” she says. “A lot of parents like me want to shield their kids from everything, but we’re not promised tomorrow.”
She knew this to be true with Luka, and wanted to make the most of every day, go out, and do things with him to the best of his abilities.
“We go out and live life. That’s what we did before his transplant and now we get the chance to still live life, now in a bigger form because he has the energy now.”