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Almost five years ago, on January 5, 2017, Myra and Nathan Edwards’ lives changed forever.
Their son, Bentley, was born, a bouncy little boy. At least that’s what they thought.
Two days later, the young couple prepared to leave the hospital and take their son home, an alert nurse noticed not all was well, but she couldn’t quite put her finger on it.
“Something seems right next to me,” recalls nurse Myra Say before taking Bentley to the neonatal intensive care unit for testing. 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 off,” Myra Edwards said.
Doctors then prepared the couple for what they said before lay of them – a lifetime of caring for Bentley, whose brain damage was so extensive he would never be able to take care of him – same.
“Based on the parts that were damaged, 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 some visual impairment,” she says.
The funny thing is, no one explained this to Bentley. Over the next few days, he acted largely like a child who had suffered no stroke – eating well, acting alert, moving and developing like a baby should in its first few days of life.
Eventually they were able to get him back to Bentley, but he remained in regular care with home therapy sessions and doctor’s 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 about this kid, we don’t need to,’ Edwards said recently during Bentley’s early treatment recall. “They said ‘He’s progressing faster than a kid his age should.'”
Edwards clarified – Doctors didn’t mean he was ahead of what they expected from a stroke victim of his age, but was ahead of the normal development of any healthy child .
“Bentley is great, we call her our miracle baby,” she said. “He is very sweet, very affectionate, very affectionate. He loves to play sports, he loves girls, bless his heart, he is the man of a little lady. There are no movement problems, no vision problems, nothing but a normal toddler who chooses and chooses what he wants to hear.
Edwards said it was their faith that helped them in those dark days when they feared for Bentley’s health and future.
“As soon as they told us that, we prayed as hard as we could pray,” she said when the doctors first broke the news for them. “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 is also that faith, and what they learned about pediatric stroke, that led them to organize an annual fundraising event to benefit pediatric stroke victims and, this year , to help a local child 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 event – it would have been the fourth, but the 2020 version was canceled due to Covid-19 restrictions.
Myra Edwards said the rally has a dual purpose – to raise awareness of childhood stroke, as well as to raise funds to help defray costs for children attending camp at UNC Children’s Hospital. Summer, Helping Hemiplegic Kids, held in Durham each summer.
However, this year, Myra said they have decided to change the focus, fundraising for 2-year-old Zoe Hall, a local diagnosed at birth with the rare kidney disease, congenital nephrotic syndrome.
At first, Edwards said she and her husband didn’t know what they were going to do other than keep the product local.
“We didn’t know we were going to give, but we wanted to keep it local… when we went through our struggles, we had huge support… now we wanted to be that for someone else. “
They started planning the event – Stand with Bentley: Charity Stroke in the Event Child – still looking for a recipient.
“Zoe Hall appeared in 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 they knew each other and she 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 hand, as well as sponsorship 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 couldn’t attend – because she had finally gained the necessary weight for the transplant, and received a new kidney just days before Sunday’s meeting in Dobson.
“We got to face them so she got to see the crowd,” Edwards said.
While Zoe and her family are unavailable to speak – they were preparing for a possible discharge this week – Edwards said everything was fine by Wednesday.
“Zoe is a strong willed, courageous girl who loves life to the fullest. She is filled with love, laughter, SASS, and courage. Her parents are very grateful for the love and support that is continuously displayed by our community, and they thank you all ”.