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Airmen Helping Airmen, Eleanor’s Story

Master Sgt. Michelle Roark and Tech. Sgt. Stephen Wilson share the story of their child being diagnosed with a rare genetic disorder and the Airmen of their wing supporting them.

MANSFIELD LAHM AIRPORT, Ohio --

Ask just about any Airman about resiliency, and to some extent they will have experience in overcoming life’s obstacles while remaining ready to serve their country. It’s never easy, they would all agree. The proverbial pitcher known as “life” will throw curveballs, fastballs, sinkers and sliders at Airmen who must physically and mentally train to face it all if they plan to make a career out of the military and maintain a healthy personal and family life at home.

The fact is, some strike out. There are resources available to improve their batting average for their next challenge at the plate but it takes the support of a team to find success together. As important as it is to reach out, it’s equally important to feel those resources are reaching out to you as well, imperative Airmen feel they have good wingmen.

Those that know and understand what military members endure tend to thank service members for their sacrifices and for those that don’t know, most of those sacrifices are burdens shared by the service member’s family and friends. It’s extended time away from home, it’s reoccurring training across the country or even the globe, it’s missed family moments you can’t recover, it’s an understanding that there is always the looming threat of the unknown call to duty yet to come.

When two service members start a family together, everything compounds. They double down on the already risky adventure called parenting. They know there will be times apart and that one of them will have to parent alone at times.

They understand the risks involved, but they also share an understanding of each other’s commitment to service and a trust that no matter what lies ahead, they’ll battle that together.

All of that can be terrifying in good health, it shouldn’t have to be harder than that. Until it is.

ELEANOR'S STORY

Master Sgt. Michelle Roark and Tech. 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 has been serving 15 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 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.

Tech. Sgt. Stephen Wilson, also serving 15 years in Security Forces, shared those years and experiences with Roark while serving together, looking out for one another as wingmen during each challenge.

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.”

Roark explained that Mansfield decided to transfer them via ambulance to Nationwide Children’s hospital in Columbus, Ohio. Eleanor was given every test imaginable; MRI, CAT scan, EEG, infectious disease testing’s, genetic testing. They spent that month living in the hospital because they were not able to control her seizures.

“Being a first time parent holding your defenseless, innocent baby in your arms while she has seizure after seizure is a nightmare no parent should ever have to face. My sister was working in the ER the evening we brought Eleanor in, she’s a Registered Nurse.” Roark said, “She gave me some advice while we were there, she is a mother of 5, and it stuck with me and got me through every needle poke, scan, seizure etc. she said, ‘Michelle, are you going to be able to handle this? She can feel your emotions, you need to be strong for her, she needs you.’ I held my seizing infant for a week without shedding a tear, being strong for her and her dad.”

Wilson recalled watching Roark handle the early seizures, “The connection between a mother and her child is truly an amazing thing to witness, Michelle kept Eleanor calm throughout it all with her calm demeanor. All while our little fierce Eleanor was poked, prodded, examined and scanned so many times we can’t remember but she took them all in stride with her mother by her side.”

The seizures continued without a diagnosis.

“We were in the dark for those first couple months with no diagnosis.” Wilson said, “On September 6th, she was diagnosed with CDKL5.”

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.”

Doctors have explained to them that much is unknown in regards 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.

“Eleanor has uncontrollable seizures, she is currently on four different types of medication,” Roark said, “She receives rescue medications when she has clusters of seizures. She has speech, physical, occupational therapies in the office once a week, we also have a therapist coming into our home to receive those same therapies.”

Essentially, when Eleanor has her seizures, there isn’t much the hospital can do for her that her parents can’t. Roark explained that in the beginning they would rush her to the emergency room, but that now they are realizing that even on her bad days, they can only help her get through them.

“As parents with a special needs child, we have adapted to her disorder as best that a parent could. A few days ago Eleanor had 18 seizures, was given rescue medications and we never left the house…if it would have been a month ago we would have been in the ER. This is just Eleanor’s life now, she has seizures, she’s unique but her smile melts everyone’s heart.”

Roark and Wilson shared some of their experience via social media, with hopes of raising awareness to their daughter’s condition and hope for support towards further research. Sleep deprivation, doctor visits, hospital bills and drill weekends. Their new normal is nothing short of exhausting.

“We monitor Eleanor 24-7, and Steve still works and I work from home a few days a week when he’s off. We function in shifts, spending maybe an hour together then start prepping for Eleanor’s meds, dad’s shift and the next day.” Roark said, “This is the new norm for us. Weekends are basically us trying to catch up at least one of us on sleep. Drill is so hard on us, Steve loses days off and that means less sleep for both of us.”

AIRMEN HELPING AIRMEN

Members from around the 179th Airlift Wing and 200th RED HORSE Squadron began to take notice. Starting with support on social media, private messages and cards in the mail, the support grew to collective groups of people on base pitching in to ease their situation in any way that they could. Some individuals even took time to visit them in the hospital or their home. The International Foundation for CDKL5-IFCR research has a fund raiser that they are spreading awareness to as well.

Roark and Wilson expressed a great deal of gratitude, “We just want the 179th members to know they have another family to lean on in rough times. Our wing has built the family atmosphere and not only are we ready for the mission but we are ready to help our families out. The amount of support we have received is nothing short of amazing and incredibly humbling. To say that our wing meets the third core value of excellence in all we do for their support would be selling them short because they have exceeded that many times over. So many people have reached out to us individually and as a group and given support in a great many ways. Our family is so thankful to be a part of a unit that not just preaches the family concept but also practices it as well. Enlisted and officer, past, present, retired, deployed and apart of new units from E-2 through O-6 have given us support. We truly cannot say thank you enough!”

Roark said military support has come from everywhere across the base and multiple individuals to include Mission Support Group, Force Support Group, Maintenance Group, Medical Group, POL (Petroleum, Oil, Lubricants), Retirees and even neighborhood veterans.

“Our neighbors, Toby and Anne Wilcox, took care of our lawn mowing multiple times while we were in and out of the hospital, Toby is a Vietnam veteran, when I told him he didn’t need to do that and how grateful we were he just smiled and said ‘one veteran helping out another.”

Flexibility has been given in their work schedules through all of this to care for Eleanor, but it’s a marathon and not a race. This disorder will continue to challenge Eleanor for life, both her life and theirs as parents. Roark says she is leaving her full time position at the unit in order to be a full time care giver, an incredibly difficult decision at this point in her career.

“This was not an easy decision for me, but Eleanor’s life is more important to me.” Roark said, “I have put my heart, my body and soul into my Security Forces career. My troops have meant everything to me. In Security Forces here, there have only been a few female Senior Non-Commissioned Officers, which I take pride in, the thought of walking away now is absolutely heartbreaking, but at this point in my life, her life means more to me than mine.”

Despite heartbreaking circumstances, these two Airmen are still feeling blessed and grateful.

“We are stressed but also we are blessed. Eleanor in all other regards is a beautiful happy baby that loves to smile every chance she gets. She loves listening to music, being read to and her parents singing along to her, even though dad can’t sing she still loves his voice, and sometimes she likes to sing along with us in her own words of course. We send videos back and forth all day long full of as much joy, smiles and happiness as we can put in them. We embrace every moment we get as family together and enjoy all that we can.”

Their positive attitude and mental toughness is resiliency personified.

“This is the hand we’ve been dealt and we refuse to let it keep us down, we always keep a smile on our face when we’re around Eleanor and she loves to smile back.” Roark said, “She’s our unique little princess and we will give her the best life and experiences that we can, same as any parent would for their child. God blessed us with her!”

As the holidays approach, the spirit of Christmas comes to mind. It’s fitting that a family that has already served and given so much is receiving love and support at a time when they need it most.

“We would just like to say to everyone supporting us through all of this, from our family to yours we thank you ever so much and wish you the best Christmas.”

There is no magic bullet in this war on a genetic disorder, but with the support and love of family and friends in the Air National Guard, Eleanor truly has an army of support.

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