A little girl with a fighting spirit. A mom who didn’t give up. A God who didn’t work an instant miracle, but continues to work. A story of struggle, persistence and hope.
Jamie and Megan Rowe’s first pregnancy was normal until Megan began labor early at 19 weeks and went on bedrest. Brynleigh was born at 39 weeks, but there were some complications.
“We got to see her about 10 hours later. They had started running all kinds of tests to figure out how much damage was done,” Rowe explained. “We’re not positive how long she was without oxygen but by the time we got to her at that 10-hour mark, she was breathing on her own.”
That wasn’t all. Brynleigh had severe jaundice and abnormal lab results, so she stayed in the Newborn Intensive Care Unit for six days. She also had a cleft palate.
After that scary beginning, everything seemed okay. Then two-month-old Brynleigh had a seizure, flailing and turning blue. Testing again showed abnormalities but a cause wasn’t found. She was sent home.
“From that day forward, Brynleigh’s medical journey went 90 miles per hour down the interstate,” Megan said.
Brynleigh continued to have seizures, never slept through the night, choked on her bottle and wasn’t hitting developmental milestones. Doctors said nothing was wrong because tests, including genetic testing, came back normal.
‘Questioning God’
Megan grew up Southern Baptist, going to church “every time the doors opened,” she said. They are members at Enon Baptist Church in Morris. Other than Brynleigh’s issues, the family was doing well.
“We did everything the right way and now our baby’s sick and nobody can help. I started questioning God like most people who have kids with disabilities. What did we do wrong that our baby deserves this?” Megan asked.
Then Jamie, Brynleigh’s dad, was furloughed due to COVID-19. Feeling completely defeated, the family decided to go out of town. Visiting Gulf Shores, they realized God hadn’t forgotten them.
The second day of the trip, Jamie ran into their room saying Rowe needed to go to the splash pad — there was a child with the same issues as Brynleigh walking with a walker. He told Megan they needed to talk to that family. The family let Brynleigh use their son’s walker the entire day.
“Brynleigh stood up on that walker like she had done it 10,000 times and took off walking,” Rowe remembered. “She was crying, watching her feet; everyone at the pool was crying; the people we just met were crying. It was a really cool experience.
“This was a God-thing; we were supposed to meet this family.”
The other mom urged Rowe to keep advocating for Brynleigh, and the encouragement was what the couple needed to keep fighting.
Diagnoses coming in
God’s involvement continued. Though COVID-19 made things more difficult, they discovered early intervention and Brynleigh started receiving physical, occupational and speech therapy, as well as special instruction.
Seeking a more accurate diagnosis, Megan called Vanderbilt University in Nashville and begged for help. She got in the next week with top neurologist Emma Grace Carter, who set up appointments with various specialists and ran more tests.
Diagnoses started coming in. Brynleigh had epilepsy, sensory processing disorder and a cleft palate so severe she should have been on a feeding tube.
Genetic testing revealed that Brynleigh had an SPG11 gene mutation, a very rare condition like ALS/Lou Gehrig’s disease. Though it doesn’t affect life expectancy, within 10 years Brynleigh could be a paraplegic.
Fast-forward a year. Even though Brynleigh is a “girly girl,” she continues to fight. Her epilepsy is like a continuous “charley horse” throughout her entire body. The pain used to make her self-harm, but she now closes her eyes and keeps going, Rowe said. She’s beginning to talk after surgery on her cleft palate. Some days she can walk and run; others she isn’t mobile at all. If someone stares at her in her neon pink wheelchair, Brynleigh just smiles and waves.
“She has zero cares,” Megan said.
Watching God move
Because Brynleigh’s disease is so rare, insurance coverage is limited. God provides through donations and motivational “Limitless” bracelets the family makes.
“As a society, we set limits for people with all types of handicaps, but we want Brynleigh to remember she is limitless,” Rowe said. “Just because something is more difficult for her doesn’t mean she shouldn’t try to achieve it — it’s the world’s limits not hers!
“My hope is that every time someone looks at Bryn’s bracelet on their wrist, they are reminded to celebrate everyone’s differences and remember that our differences are what make each of us limitless.”
Though Brynleigh’s life will never be easy, the Rowes know if they depend on God they will make it.
“God doesn’t give you more than you can handle,” Rowe asserted. “We’ve watched Brynleigh move mountains and affect people. She doesn’t meet a stranger, so we have the opportunity daily to share Bryn’s testimony and how God’s working through her.
“Do I still struggle with my faith? Of course, because I watch my baby struggle every day. I think it would be abnormal if I didn’t. But every time we get down and out and wonder what to do, God’s like, ‘But watch this!’ You can’t ask for anything more than to watch God move through your kid.”
For more about Brynleigh’s journey and specific prayer and financial needs, find “Bryn’s Bunch” on Facebook or email brynsbunch@yahoo.com.
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