Almost five years ago, on January 5, 2017, Myra and Nathan Edwards’ lives changed forever.
Their son Bentley was born a hopping little boy. Or so they thought.
Two days later, as the young couple were preparing to leave the hospital and take their son home, an attentive nurse noticed that everything was not okay, although she could not exactly say.
“Something just looks strange to me,” Myra recalls the nurse saying before taking Bentley to the neonatal intensive care unit for tests. There, little Bentley had seizures and hospital staff discovered that he had suffered a stroke during childbirth.
He was transferred to the Brenner Children’s Hospital, where doctors confirmed that he had suffered significant brain damage.
“On the (MRI) images, the doctor showed us the parts of Bentley’s brain that had died,” said Myra Edwards.
The doctors then prepared the couple for what was to come – a lifetime of caring for Bentley, whose brain damage was so severe that he could never 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 could have developmental delays and a visual impairment,” she said.
The funny thing was, Bentley didn’t explain that to anyone. In the days that followed, he acted largely like a non-stroke child – ate well, acted attentively, moved, and developed as a baby would expect in the first few days of life.
Eventually they were able to bring Bentley home, despite receiving regular home therapy sessions and doctor visits for 18 months when his medical team decided it was time to end the treatments.
“They said, ‘We literally can’t do anything else for this kid, he doesn’t need us,'” Edwards said recently, recalling Bentley’s early treatment. “They said, ‘He’s progressing faster than a kid his age should.'”
Edwards made it clear – the doctors weren’t saying that he was ahead of what they wanted in a stroke patient his age, but that he was ahead of the normal development of a healthy child.
“Bentley is great, we call him our miracle baby,” she said. “He’s very sweet, very affectionate, very loving. He loves to play sports, he loves girls, bless his heart, he is a little lady’s man. There are no movement problems, no vision problems, nothing but a normal toddler choosing and choosing what he wants to hear. “
Edwards said it was their faith that helped them through those dark days as they feared for Bentley’s health and future.
“As soon as they told us, we prayed as hard as we could,” she said when the doctors first brought the news to them. “We couldn’t do anything else. We just had to let go and let God go. I know that sounds like a cliché, but that’s all we could do. “
It is also this belief and what they learned about childhood strokes that led them to host an annual fundraiser to help 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 event of its kind – it would have been the fourth, but the 2020 version has been canceled due to COVID-19 restrictions.
Myra Edwards said the purpose of the meeting was twofold: to raise awareness of stroke in children and to raise funds to cover the costs of children attending the UNC Children’s Hospital’s summer camp, Helping Kids with Hemiplegia, in Durham each summer .
That year, however, Myra said they had decided to change focus and raise funds for Zoe Hall, a local 2-year-old who was diagnosed with a rare kidney disease called Congenital Nephrotic Syndrome at birth.
At first, Edwards said she and her husband weren’t sure what 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 crossed my mind,” she said. “Your mother and I went to school together.” She said that she and Zoe’s mother weren’t particularly close, but they did and she knew about Zoe’s condition.
“God put this cute girl in our hearts,” she explained. “Zoe is not a pediatric stroke survivor, but she is a survivor herself. She is a fighter, an overcomer and a miracle. When you see them, you see God’s loving goodness. “
Edwards said the local people really got into it this year.
“That was our biggest year. We had a little over 2,000 people. “
She said there were 60 craft vendors, along with sponsor tables, five food trucks, and The Flying Hatchet, a group of ax throwers from Greensboro.
“They donated all of the proceeds from the event directly to Zoe,” said Myra Edwards. “We had a lot of salespeople who donated their proceeds to Zoe. That was phenomenal. “
The best news of all was that Zoe couldn’t attend – because she had finally reached the weight required for the transplant and was given a new kidney just days before the Sunday meeting in Dobson.
“We could give them face time so they could see the crowd,” said Edwards.
While Zoe and her family were unavailable for interview – they were preparing for a possible discharge this week – Edwards said everything would be fine as of Wednesday.
“Zoe is a strong-willed, brave girl who loves life to the fullest. She is full of love, laughter, cheek and sperm. Your parents are very grateful for the love and support our community continually shows, and they thank you all. ”