A Miracle Named Jewel
 

By : Gail Parsons

When five-year-old Jewel’s Make-A-Wish moment came true, it wasn’t just a celebration of a little girl’s dream. It was a testament to survival, faith, and joy that doctors said would be impossible.

Her mother, Hannah Van Puffelen, still marvels at the life her daughter is living.

“She is a very, very lively little girl,” Hannah said. “She is so joyful. She smiles and laughs and is very aware of people, and she loves so hard. Doctors don’t know everything.

That’s not to say Jewel doesn’t have challenges. They are not naïve to that fact, but they just try to give her the most normal life possible and give her experiences.

Those experiences now include a wish granted by the Make-A-Wish Foundation, something the Van Puffelen family never dared to imagine in Jewel’s earliest days.

A Long Road to Motherhood

“Let me start from the beginning,” Hannah said. “First of all, she is named after my grandmother, Joel Hazel. She passed away last year, but she is named after her, Jewel Hazel.”

Early in their marriage, Hannah and her husband, Breck, were told they would probably have trouble conceiving.

“We said, we’re just gonna trust the Lord and … see what happens,” she said.

The couple started contemplating and exploring other options, like adoption or IVF. However, two years later, they received what Hannah calls “our first little miracle”—a positive pregnancy test.

When they learned they were expecting a girl, the name Jewel was already waiting. Their little miracle baby would be named after Hannah’s grandmother, Jewel Hazel. Hannah and Breck were thrilled and started planning to bring home their baby.

But joy quickly turned to fear at Hannah’s 20-week ultrasound, which was during the height of COVID-19. She went to her scheduled appointment alone, and much of that day is a blur.

They started with a routine procedure, and everything seemed normal. But then the doctor came in and told her they weren’t going to do anything more that day and he needed to talk to her about the scan.

“The doctor realized then that there were some things that looked different,” she recalled. “He said, I think there’s something wrong with your baby. I felt completely devastated. All I had ever wanted was to be a wife and a mother.”

Her love for babies and children led her to teaching pre-kindergarten for several years — in that moment, it seemed like her dream was being snatched away from her.

Tests confirmed that Jewel had Trisomy 18, also known as Edwards Syndrome, a condition widely considered “incompatible with life.”

In an instant, all their plans and dreams changed. That night, the couple sat on the floor of the nursery and just cried.

“They told us that she would most likely not make it to birth, and if she did, that she would only live just a few hours,” Hannah said. “And then an even smaller percentage of that, that she makes it to her first birthday.”

She turned five on Sept. 24.

The reported median survival of patients with Edwards syndrome is only 4 days, and only 5–10% of the patients survive until 1 year of age — Jewel is approaching her fifth birthday.

“We made the decision during the pregnancy to give her any support that she needed medically,” she said.

Unfortunately, the level of care Hannah and Jewel needed was not available in Savannah. At 34 weeks, they moved temporarily to Atlanta. There Hannah underwent additional tests and ultrasounds and it was there they learned Jewel also had a heart defect and spina bifida.

“I had multiple hours-long scans … for them to gather as much information as they possibly could to be prepared for out delivery,” she said.

A Birth Full of Song

At 37 weeks, Hannah delivered Jewel by C-section.

“It was probably one of the scariest moments of my life, because we did not know what was going to happen,” she said.

But then the impossible happened—Jewel cried on her own.

“The doctor, when they pulled her out, she was crying and breathing on her own, which they said she would probably not do, and the doctor that delivered her… they all stopped and sang Happy Birthday to her. It was the sweetest thing.”

Jewel needed oxygen, and she still requires it today. But she was alive. A week later, she was still alive. Finally, just in time for Christmas, the Van Puffelens were able to bring their baby home.

A Miracle After Miracle

In her short life, Jewel has endured months in the NICU, heart surgery, pulmonary hypertension treatments, and countless hospital visits.

“Every single step in her story has just been, honestly, a miracle,” Hannah said. “Even in the hardest times, Jewel showed resilience. She pulls through every time, and she finds joy even in the moments when she’s very, very sick.”

Now, Jewel is a big sister to Magnolia, 2, and Ridge, 11 months. Though nonverbal, she makes herself heard.

“She always has a lot to say,” Hannah said. “She loves music. In her own way, she sings along when we’re in church. She raises her hands when we worship. She just loves people really.”

She also has a fascination with lights. She loves the lights on the freezer in the grocery store, because when someone walks past them, they come on and she just thinks that’s hilarious, Hanna said.

Her favorite movie is The Little Mermaid. Although Jewel cannot state it, Hannah knows because it is the only movie she will sit and really watches the entire show.

And then there’s her personality.

“She’s very sassy,” Hannah laughed. “She loves to roll her eyes. And yeah, she is always just talking and smiling.”

It’s a far cry from the doom and gloom picture that had been painted for them. Some in the medical field warned them Jewel would never smile, she wouldn’t engage with them and maybe not even know they were in the room.

“That was the life that we were presented with,” Hannah said. “And I'll tell you, it is nowhere near that. That is not the case. She is a very, very lively little girl. She is so joyful. She smiles and laughs and is very aware of people and she loves so hard.”

Life with Jewel

Daily life for the Van Puffelen family includes therapies, medications, oxygen, and tube feedings, but also family outings to the pumpkin patch, the fair, and church.

“We figured out life with Jewel,” Hannah said. “It is beautiful. It really is. And I could not imagine not having her.”

The family’s faith anchors them at Center Point Community Church, where Hannah’s father leads worship. Music has become a shared love for Jewel, who beams during Sunday services and loves to sit and watch his play and sing.

“She literally loves anything with a beat,” Hannah said. “She gets down to anything. And if you put some lights with it, you got a really happy Jewel.”

The Wish

While many children dream of Disney trips or celebrity meet-and-greets, the Van Puffelens chose something different — something Jewel could enjoy every day of her life.

“Jewel loves to be outside. She loves the sky, the sun, and just loves looking at trees and flowers. But she’s on a lot of medications that don’t allow her to be in the direct sun. She’s very sensitive to heat, and she swells up if she gets bit by any bug. Living in South Georgia, all of those things are a problem.

The solution was a screened-in porch with a skylight — an idea the Make-A-Wish Foundation embraced. The wish wasn’t an easy one to grant. After two and a half years of planning and searching for the right builder, Balfour Beatty, a national construction company with offices in Savannah and Atlanta, stepped in to complete the project.

Finished in late August, the porch is now Jewel’s sanctuary. Fans keep the space cool, a skylight brings in the sun and sky she loves, and a special saucer swing lets her stretch out and sway in safety.

“It is beautiful. They did such a great job,” Hannah said. “We’ve been out here literally any time that we can. It’s perfect.”

For Jewel, it means freedom. For her parents, it means peace. For her siblings, it means more time playing together outdoors. And for the community of volunteers and sponsors who built it, it means seeing a miracle child smile under the wide-open sky.

“When we first learned the diagnosis, we prayed, we prayed a lot for there not to be anything wrong,” Hanna said. The Lord doesn’t always grant what we pray for, but he made a really beautiful story out. Even though we didn’t get what we thought we wanted, he gave us what we needed.”