Almost five years ago, on January 5, 2017, Myra and Nathan Edwards’ life changed forever.
Their son, Bentley, was born, a bouncy little boy. At least that’s what they thought.
Two days later, as the young couple prepared to leave the hospital and bring their son home, an alert nurse noticed that all was not well, although she could not put her finger on it. above.
“Something seems weird to me,” Myra recalls, saying the nurse said before taking Bentley to the neonatal intensive care unit for tests. While there, little Bentley had seizures and hospital staff discovered he had suffered a pediatric stroke during childbirth.
He was transferred to the Brenner Children’s Hospital, where doctors confirmed he suffered extensive brain damage.
“On the (MRI) images, the doctor showed us the parts of Bentley’s brain that had died,” Myra Edwards said.
Medics then prepared the couple for what they said lay ahead – a lifetime of caring for Bentley, whose brain damage was so severe he would never be able to take care of himself.
“Based on the damaged parts, Bentley would have a movement problem like cerebral palsy on his left side, his left side would be weaker, he might have developmental delays, as well as visual impairment,” he said. she declared.
The funny thing is, no one explained this to Bentley. Over the next few days, he acted largely like a child who had no stroke – eating well, being alert, moving around, and developing like a baby should in its first few days of life.
Eventually they were able to get Bentley home, although he remained in regular care with home therapy sessions and doctor’s visits for 18 months, when his medical team decided it was time to stop. treatments.
“They said ‘There is literally nothing else we can do for this kid, he doesn’t need us,’” Edwards said recently of Bentley’s early treatment. “They said ‘He’s progressing faster than a kid his age should.'”
Edwards clarified – Doctors were not saying he was ahead of what they expected from a stroke victim of his age, but that he was ahead of the normal development of any healthy child .
“Bentley is awesome, we call it our miracle baby,” she said. “He is very sweet, very affectionate, very affectionate. He loves playing sports, he loves girls, bless him, he’s a man of little ladies. There is no problem with movement, no problem with vision, just a normal toddler choosing what they want to hear.
Edwards said it was their faith that got them through those dark days when they feared for Bentley’s health and future.
“As soon as they told us this, we prayed as hard as we could pray,” she said of the first time doctors told them the news. “We couldn’t do anything else. We just had to let go and let God. I know it sounds like a cliché, but that’s all we could do.
It was also this faith, and what they learned about pediatric stroke, that led them to organize an annual fundraiser to benefit pediatric stroke victims and, this year, to help a local child in waiting for 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 canceled due to COVID-19 restrictions.
Myra Edwards said the rally had a dual purpose: to raise awareness about pediatric stroke and to raise funds to help cover the costs of children attending UNC Children’s Hospital’s summer camp, Helping Kids with Hemiplegia, which is held in Durham every summer.
This year, however, Myra said they decided to change direction, raising money for Zoe Hall, a local 2-year-old girl diagnosed at birth with the rare kidney disease, congenital nephrotic syndrome.
At first Edwards said she and her husband weren’t sure what they were going to do other than keep the product local.
“We didn’t know who we were going to give it to, but we wanted to keep it local… when we got 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 into my head,” she said. “Her mother and I went to school together.” She said that she and Zoe’s mother weren’t particularly close, but did know each other and was aware of Zoe’s condition.
“God has placed 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, a winner and a miracle. When you see it, you see the loving goodness of God.
Edwards said people in the area have really come on board this year.
“It was our biggest year. We had a little over 2,000 people.
She said there were 60 craft vendors on site, as well as sponsor tables, five food trucks, as well as The Flying Hatchet, an ax throwing troop from Greensboro.
“They donated all of the proceeds from the event directly to Zoe,” Myra Edwards said. “Many vendors donated their profits to Zoe. It was phenomenal.
The best news of all was that Zoe was unable to attend, as she had finally reached the necessary weight for the transplant and received a new kidney just days before Sunday’s rally in Dobson.
“We got to face them so she got to see the crowd,” Edwards said.
While Zoe and her family were unavailable to talk – they were preparing for a possible release this week – Edwards said everything was fine on Wednesday.
“Zoe is a brave and determined girl who loves life to the fullest. She’s filled with love, laughs, daring and cum. Her parents are extremely grateful for the continued love and support of our community, and they thank you all. ”