A story of resilience and perseverance.

Master Sgt. Michelle Roark and Master Sgt. Stephen Wilson, both of the Ohio Air National Guard’s 179th Airlift Wing Security Forces Squadron, Mansfield, Ohio, can attest to the resiliency it’s requiring of them. They know all too well the importance of a good wingman and why being part of a team that cares for each other gives us all a fighting chance.

Roark served 16 years as a female in the Security Forces Squadron, requiring a certain level of mental toughness to keep up with the nature of the job. Serving multiple combat deployments overseas in a male-dominated career field where respect is given only after it’s earned by peers taught her to put on a brave and confident face as part of her uniform.

She overcame adversity associated with the career field, arming herself with knowledge of the job as an Airman. Experience developed her into a respected Non-Commissioned Officer, making her an example to look to within the squadron for male and female defenders alike.

Master Sgt. Stephen Wilson, also serving 22 years in Security Forces, shared those years and experiences with Roark while serving together, looking out for one another as wingmen during each challenge, including their deployment to Afghanistan.

Their bond grew into a relationship over time. In the spring, they were happily announcing their engagement to marry and expecting a child. After celebrating the seemingly healthy birth of their daughter, Eleanor, in June, these two full-time Airmen soon learned that some challenges are impossible to train for.

After a month of good health, Eleanor suddenly had a seizure.

“On July 19th, our lives changed forever. Eleanor had what appeared to us to be a seizure in our living room while we were enjoying some family time. She came back to baseline immediately,” Roark said. “We packed a quick bag and headed to the Mansfield ER. Eleanor seemed to be fine the few hours we were there. The doctor said sometimes infants appear to have seizures to parents, but they in fact are not. They released us, and about 5 minutes on the road, Eleanor started to have another seizure and started vomiting. I got her out of her car seat and placed her on my lap on her side so she would not choke as we rushed back to the ER as quickly and safely as possible.”

And thus began the journey of stress, uncertainty, sleepless nights, and extended stays at Nationwide Children’s Hospital in Columbus, OH. In those early months of her life, Eleanor had countless seizures which were hard to get under control, leaving Roark and Wilson in the dark. Finally, in Sept of 2019, a diagnosis of CDKL5 was given to them.

Rarediseases.org describes CDKL5 as a rare X-linked genetic disorder that results in severe neurodevelopmental impairment and early onset, difficult-to-control seizures. CDKL5 stands for cyclin-dependent kinase-like 5 and is a gene located on the X chromosome. Most of the children affected by the CDKL5 disorder suffer from seizures that begin in the first few months of life. Most cannot walk, talk, or feed themselves, and many are confined to a wheelchair. Some may have scoliosis, visual impairment, gastrointestinal difficulties, respiratory, and sleep problems.

“We took the news of her diagnosis with CDKL5 better than we thought. Having an answer helped, but with that created a world of new questions, most of which could not be directly answered,” Roark said. “We were frustrated; every question we had for them there wasn’t an answer. Will she walk? Will she ever say momma or daddy? Will she need a feeding tube? The response was there isn’t enough data out there because it’s a newer genetic disorder. ‘Only Eleanor can show us what she can do,’ her neurologist said.” Most of those questions are still left unanswered to this day, with many adding to the list of unanswered.

Doctors have explained to them that much is unknown in regard to the disorder. There is no cure as of yet. Treatments and medications are experimental at best, and each case ranges in its severity but prepared them for the worst-case scenario. Over time, this disorder will chip away the quality of life of their young daughter if further research and developments are not made in the future.

Fast forward to the present, and Eleanor made it over two and a half years without a seizure, which is a streak we were incredibly proud of. On doctor’s orders and guidance, we tried to wean her off the keto diet to look out for her overall health. Unfortunately, this adjustment caused her to start having seizures again, so we reversed course back onto the keto diet, and they have slowly decreased. Developmentally, Eleanor is a really big 10-month-old. She can’t walk, can’t talk, and is currently in a wheelchair. But her smile still lights up every room she comes into. She loves her music and her classic Disney movies like Cinderella and Beauty and The Beast. She sings in her own “words” and says “hey” daddy via videos. She has also figured out how to get her own sips and scam her father into “up-ups.”

Michelle’s Story

Michelle had to make the heavy decision to walk away from a career she worked incredibly hard at, overcoming stereotypes in a male-dominated career field, earning the respect of all that worked with her and for her. She knew that being Eleanor's mother and caretaker was a far more important calling. A little over a year ago, Michelle started having issues with her lower back. Those problems became increasingly worse and eventually turned into a diagnosis of multiple sclerosis. She spent a few weeks in the OSU hospital down in Columbus, OH, after losing the ability to walk. She did not let this diagnosis deter her. Through sheer grit and determination and with the help of her doctors, she re-taught herself to walk again. Through hours and hours of physical therapy, she started with a few steps unassisted and is now currently walking 3-5 miles daily.

Stephen’s Story

In the winter of 2020, Stephen started experiencing some severe pain in his right knee. After seeking the advice of his doctor and taking some tests to figure out the issue, they realized he had a serious infection. The next day at 0700, he was in surgery struggling to save his knee, his leg, and his life. The infection had taken its toll on his knee, and the decision was made to replace his knee. In Oct of 2021, he received a full knee replacement. Stephen lost his knee and the ability to do a few things but kept his leg and his life. He still serves proudly with the 179th Security Forces Squadron and enjoys being as active as he can be, spending hours every week in the gym and doing kettlebells with his beautiful wife.

We are fundraising to support Eleanor's ongoing medical care and home equipment she will need as she continues to grow.