Nearly five years ago, on Jan. 5, 2017, Myra and Nathan Edwards’ lives changed forever.
Their son, Bentley, came into the world, a bouncing baby boy. At least that is what they thought.
Two days later, as the young couple was preparing to leave the hospital and take their son home, an alert nurse noticed not all was well, though she couldn’t quite put a finger on it.
“Something just looks off to me,” Myra recalls the nurse saying before taking Bentley to the newborn intensive care unit for tests. While there, little Bentley experienced seizures, and the hospital staff discovered he had suffered a pediatric stroke during birth.
He was transferred to Brenner Children’s Hospital, where doctors confirmed he had experienced significant brain damage.
“On the (MRI) images, the doctor showed us the parts of Bentley’s brain which had died off,” Myra Edwards said.
Doctors then prepared the couple for what they said lay ahead of them — a lifetime of caring for Bentley, whose brain damage was so extensive he would never be able to care for himself.
“Based on the parts that were damaged, Bentley would have a movement issue like cerebral palsy on his left side, his left side would be weaker, he could have developmental delays, as well as some vision impairment,” she said.
Funny thing was, no one explained that to Bentley. Over the coming days he acted largely as a child who had suffered no stroke — eating well, acting alert, moving and developing as a baby is expected to in his first days of life.
Eventually, they were able to take Bentley home, though he remained under regular care with in-home therapy sessions and doctor-office visits for 18 months, when his medical team decided it was time to stop the treatments.
“They said ‘There is literally nothing else we can do for this kid, he doesn’t need us,’” Edwards said recently when recalling Bentley’s early treatment. “They said ‘He’s progressing faster than a kid his age should.’”
Edwards clarified — the doctors were not saying he was ahead of what they expected from a stroke victim his age, but that he was ahead of any healthy child’s normal development.
“Bentley is great, we call him our miracle baby,” she said. “He is very sweet, very affectionate, very loving. He loves to play sports, he loves girls, bless his heart he’s a little lady’s man. There are no movement issues, no vision issues, nothing but a normal toddler who picks and chooses what he wants to hear.”
Edwards said it was their faith that helped them through those dark days when they feared for Bentley’s health and future.
“As soon as they told us that, we prayed just as hard as we could pray,” she said of when doctors first broke the news to them. “There was nothing else we could do. We just had to let go and let God. I know that sounds like a cliche, but that’s all we could do.”
It is also that faith, and what they’ve learned about pediatric stroke, that has led them to hold an annual fundraising event to benefit pediatric stroke victims and, this year, to help a local child awaiting a kidney transplant.
Last weekend, the couple hosted Stand With Bentley at The Barn at Heritage Farms in Dobson. It was the third such event — it would have been the fourth, but the 2020 version was cancelled because of COVID-19 restrictions.
Myra Edwards said the gathering serves a dual purpose — to raise awareness of pediatric stroke, as well as to raise money to help defray costs for children attending UNC Children’s Hospital’s summer camp, Helping Kids with Hemiplegia, held in Durham each summer.
This year, however, Myra said they decided to change the focus, raising money for Zoe Hall, a local 2-year-old diagnosed at birth with the rare kidney disease, congenital nephrotic syndrome.
At first, Edwards said she and her husband wasn’t sure what they were going to do, other than keep the proceeds local.
“We didn’t know who we were going to give it to, but we wanted to keep it local…when we went through our struggles, we had a huge support system…now we wanted to be that for someone else.”
They started planning the event — Stand with Bentley: Pediatric Stroke Charity Event — still looking for a recipient.
“Zoe Hall popped in my head,” she said. “Her mom and I went to school together.” She said that she and Zoe’s mom weren’t particularly close, but they knew one another and she knew of Zoe’s condition.
“God laid this sweet girl on our hearts,” she explained. “Zoe is not a pediatric stroke survivor, but she is a survivor in her own right. She is a fighter, an overcomer, and a miracle. When you see her, you see God’s loving kindness.”
Edwards said area people truly rallied around the cause this year.
“This was our biggest year. We had a little over 2,000 people.”
She said there were 60 craft vendors on hand, along with sponsor tables, five food trucks, along with The Flying Hatchet, an ax-throwing troupe from Greensboro.
“They donated all of their proceeds from the event straight to Zoe,” Myra Edwards said. “We had lots of vendors donate their proceeds to Zoe. That was phenomenal.”
The best news of all was that Zoe was not able to attend — because she had finally reached the necessary weight needed for the transplant, and received a new kidney just a few days before Sunday’s gathering in Dobson.
“We were able to Face Time them, so she got to see the crowd,” Edwards said.
While Zoe and her family were not available to talk — they were preparing for a possible discharge this week — Edwards said all was well as of Wednesday.
“Zoe is a strong-willed, brave girl who loves life to the fullest. She’s filled with love, laughter, sass, and spunk. Her parents are extremely thankful for the love and support that is continuously shown by our community, and they thank you all.”