Meet Rowan

On May 7th, 2012, Erin Dunagan welcomed her second baby girl, Rowan, into the world. Everything went smoothly until Rowan was four months and started showing some odd behaviors.

“Since this was my second child, I had some reference of milestones, but at the same time, I reminded myself that every child is different. It wouldn’t be fair to compare Rowan’s development with her sister’s. I was first concerned for Rowan when I noticed she started eating differently. At six months old, I really felt a tug that something much more was going on as I witnessed her day to day and interacting with babies her age. Rowan always had tight fists, clenching her thumbs. She wouldn’t open her hands, even when reaching for things. She also wasn’t sitting up or even attempting to roll over,” Erin explains.

Despite not hitting some milestones, Rowan was a social butterfly. She loved engaging with people and her laughter often filled a room. But as time went on, Erin’s concerns only grew. At nine months old, Rowan met with her pediatrician for an MRI. Initially, the neurologist suspected that Rowan had cerebral palsy, but after a second opinion, she was re-diagnosed with Bilateral Perisylvian Polymicrogyria (BPP).

According to the National Organization for Rare Disorders, BPP is a rare neurological disorder that affects the cerebral cortex (the outer surface of the brain). The cerebral cortex of the brain normally consists of several deep folds and grooves. In BPP, the grooves that develop during embryonic growth form improperly, resulting in an increased number of small folds. Signs and symptoms typically become apparent at birth or infancy, and may include partial paralysis of the face and throat region, problems with speech and swallowing, seizures, and mild-severe intellectual disability.

In Rowan’s case, epilepsy has been the cause of most of her health scares since they first showed up at two-and-a-half years old.

“Most of our time spent in the hospitals has been because of seizures. Rowan’s seizures present themselves in two different ways. Typically, they are a repeated pattern where her arms and face tense and release. The second one is a little more strange; she’ll look off and drop her head back a little. Both of them completely zap her,” Erin explains, “With epilepsy, there is always the chance of regression and not coming back from it. Thankfully, Rowan has always come back to her baseline eventually.”

In March 2019, Rowan had her most significant seizure to date. At the time, Erin and the girls were living in south central Nebraska. They immediately rushed her to the ER and doctors feared that Rowan’s seizure may have led to a stroke. Without adequate resources at the ER, the decision was made to life-flight Rowan to Denver, CO.

Luckily Rowan recovered from this episode and the family has since learned a lot about what can trigger Rowan’s epilepsy.

“Rowan has three to four ‘seasons’ of seizure activity a year, for now. We have had to increase our defense against them as she’s gotten older. The winter months can be the hardest with cold and flu season. While sometimes they can be random, we’ve also learned that any sense of sickness usually drops her threshold and often triggers her seizures,” Erin shares.

While keeping Rowan healthy is the top of the list, experiencing and enjoying life is a very close second.

“Rowan savors life! She has an appetite for experiences, getting out and living. It’s so funny because if she could safely, she would go as fast and as far as she can. I love it, but the girl is fearless and sometimes we have to pump the brakes,” Erin laughs, “Rowan loves to be involved and that’s the foundation of why she loves adventures.”

Rowan has joined her mom in road races, tried adaptive skiing, and adaptive rock climbing. She also loves simple hikes with her mom and big sister, Avery.

“When we hike, I carry her on my back. It’s such a cool way to give her a different experience and have a new view of the world,” Erin shares.

Along with being an adventurous soul, Rowan is proving to everyone around her that she is observing, listening, and has much to share.

“In the past couple of years, Rowan has grown so much in the way that she understands and is able to communicate in her own way. She is nonverbal, and we are working with an AAC device, but even without it, she proves that she has the drive to learn and do things herself,” Erin gleams, “When you first get a diagnosis, there are so many unknowns and I was repeatedly told that every BPP case is different. In the beginning, I consumed so many articles and blogs from other moms, but it got to a point where I had to shut it down. I decided that we would have our own story. From all of the unknown to where we are today, I couldn’t be more proud of Rowan.”

With every milestone or inchstone, Rowan’s big sister, Avery, is right there to cheer her on.

“Avery would not be the same without Rowan, and Rowan wouldn’t be the same without Avery. It’s honestly the coolest love story. Avery sees and celebrates Rowan for who she is and doesn’t expect anything different. Avery goes out of her way to include Rowan and is constantly encouraging every win Rowan has. Because of Rowan, Avery has developed so much awareness about life for being a young teen, and even though I wish she didn’t have to witness some things, it has made her into this really incredible soul towards people,” Erin gleams, “I’m front row and as a mom, their connection has put everything into perspective for me. It has helped me step up and forward in life no matter what our circumstances are.”

Today Rowan is ten years old and finishing her last year of elementary school. She attends public school and is in a regular classroom along with the district’s ACP program.

“Rowan being involved at school and other activities in our community has been so important. She is super social and the way kids include her is beyond a joy to watch. In PE, she has been using a gait trainer – standing on her own two feet and walking/running all around the gym! She works really hard for every single step that she overcomes. It’s so much fun to see how much she has grown and developed and I truly believe that she’s only just getting started.”

Time to get loud shouters!

Throughout the month of February we will be shouting loud for Rowan!

So click here to shop now where every purchase in February will help with the cost to purchase an adaptive jogging stroller to allow Rowan to have fun experiences together with her mom and sister.

To help support kids like Rowan every month, click here to start a monthly subscription.