Mechanical heart gives 7-year-old Macon girl new lease on life

In many ways, Macon’s Myliyah Grace Leitzsey is like any other 7-year-old child. She loves music and painting and coloring.

Sometimes, when she would wake up in the middle of the night in her hospital bed at Children’s Healthcare of Atlanta, she’d want to paint a heart or flowers.

And that was just fine with her mother, Queenishua Moses. She was happy to see her child happy.

Grace has spent much of the past seven months confined to the hospital because of a rare heart condition. Born with hypoplastic left heart syndrome, she is awaiting a heart transplant. Right now, the left side of her heart is too underdeveloped to pump blood efficiently. According to the Mayo Clinic, hypoplastic left heart syndrome affects about 1,000 newborns in the country yearly, and the cause is unknown. 

Grace was diagnosed at 20 weeks and has spent years in and out of hospitals for treatment.

It was in September, shortly after the new school year started, that teachers at Macon’s Alexander II Magnet School noticed that something wasn’t right with Grace. She seemed to be struggling to breathe, so they called an ambulance.

In early March, Grace went into cardiac arrest, but doctors were able to bring her back. She then had an 11-hour surgery during which she received a mechanical heart known as a VAD, or ventricular assist device. The mechanical heart has helped her go back to being a kid as she awaits a transplant.

“She hasn’t been able to be this normal in a long time, like playing and sometimes running,” Moses said. “She just can be a normal kid.”  

Currently, Grace and her mom are staying at the Ronald McDonald House near the hospital in Atlanta, so her doctors can keep a close eye on her until they feel comfortable sending her back to Macon. 

When Moses received the news that her daughter was ready to leave the hospital, she felt nervous.

“I was so used to being in the hospital because for the last seven months, that was our home,” Moses said. 

One day soon, she hopes, they’ll be able to go home to Macon.

When the perfect heart becomes available, Grace will have two hours to make it to the hospital, then she’ll go right into surgery. Moses says she’s already seen the unknowns and what ifs. It’s scary.

“I’m praying and hoping that she could get one by the end of the year,” Moses said. “June would be four years we’ve been waiting.”

During her journey, Grace has received much support. A GoFundMe account was set up. Her school, Alexander II Magnet, has “Do it for Grace Fridays,” and she has received help from her grandmother’s church, Ebenezer Missionary Baptist Church, and their church in Atlanta, Renaissance Church of Christ.

She also receives support from her godparents — Bibb County schools Superintendent Dan Sims and his wife, Traci.

Sims met Grace last August. He went to check in with the family at Children’s Healthcare of Atlanta, which sparked ongoing check-ins and support throughout the week. 

Then, Grace asked the couple to become her godparents. They agreed. 

Hospital life hasn’t always been pleasant. But during her time there, Grace recorded two songs at Seacrest Studio, a broadcast studio at the hospital for patients. Sims was featured on the second song, “Grace’s Heart Hunt,” which meant a lot to him.

“The message of the song is what we’re all wishing and praying for, all the time, and that is for her to receive a heart and to get back to a normal life,” Sims said. “Being a part of that song and having the opportunity for the release and to be present for that, as well, is just adding more value to our relationship.”

This is actually the second time that Sims had the opportunity to sing with Grace. Back in September, they sang one of her favorite songs, “Trust in God,” by Elevation Worship.

Grace asks that people continue to pray for her.

“I’m grateful that she’s out of the hospital and at least her VAD procedure has given her what I consider to be a new lease on life, for now, as she continues to wait on that heart,” Sims said. “She was in that hospital for a very long time, day in and day out, and I think she’s really enjoying what feels more like a regular life right now … and that’s what we’ve been praying for.”

This summer, Moses had hoped to take her daughter to the beach, her favorite place, but the VAD can’t be submerged in water. Instead, she hopes to take Grace somewhere closer to Atlanta. 

When Grace receives her miracle heart, Moses will be able to take her where she wants to. At the moment, that’s on a cruise, specifically one that’s Hello Kitty themed because she loves Hello Kitty.

For now, Grace is looking forward to playing with her parents, four siblings, cousins and friends.