FORT EUSTIS, Va. –
All of Sophia's toys are practically identical. She picked some out of the plastic toy jar in the large, open living room and matched them before reaching for another set. Grace stood by, ready to help if needed.
Sophia can't speak, but Grace knows what she wants by now.
Since Sophia's birth five years ago, Grace has been by her side, either on their way to Naval Medical Center Portsmouth for another appointment or sleeping side-by-side in their home on Fort Eustis. Grace is always nearby, hoping Sophia doesn't start seizing, and if she does, that it won't last long.
If a seizure were to continue, it would mean another trip to the hospital, another late night for their mother, Monica, and another week of work missed as their dad, David, takes Sophia to another set of appointments.
At worst, it could mean Grace might not see Sophia play with her toys again - something her family doesn't want to think about.
The Hong family, all devout in their faith, have changed their lives to cope with Sophia's condition. U.S. Army Sgt. David Hong, Fort Eustis chaplain assistant, and his family have relied on their faith and military family to cope with Sophia's rare condition.
Sophia has Dravet Syndrome, a rare form of intractable epilepsy caused by a genetic mutation that affects one in 40,000 people. According to the Dravet Foundation, the affliction, also known as Severe Myoclonic Epilepsy in Infancy, manifests around one or two years after birth. Children suffer from a variety of seizures caused by the smallest of triggers, like a change in temperature, closing their eyes too fast or eating cold food. If the children aren't properly tended to, seizures can worsen, increasing the chance of falling-down seizures or even sudden unexplained death in epilepsy, or SUDEP.
To cope with Sophia's potential seizures, the Hong household is devoid of hard corners and easy-to-reach sharp objects, and the temperature is 72 degrees year-round. Sophia's diet is closely monitored and she sleeps in a room full of mattresses to prevent injury during the night, when she has most of her seizures.
In addition to these precautions, her family is always close by. Wherever Sophia goes, her sisters aren't far behind.
"Whenever Sophia is gone to appointments or school, we miss her," said Grace. "Even though we have to have things a certain way with her around, it still feels like a part of our family isn't here when Sophia is gone."
Mary, the youngest, whispers quietly to Grace as she plays, clearly excited, bobbing her head with a wide smile. Mary is a talkative toddler, and whether it is English or Korean, she always has something to say, albeit quietly.
"When I was younger, it was hard not having an average sister. I didn't understand Sophia," said 11-year-old Grace. "I loved her unconditionally, though, and now that I am older, I [understand] and love her for who she is."
Sitting beside Grace, Mary interjects with a rapid-fire mix of English and Korean, and then hops off one of the family's two edgeless couches to Sophia, giving her a kiss on the cheek and sitting down to play on the pristine carpet. Although Mary seems perfectly content to watch Sophia and shower her with affection, Grace knows it can be hard.
"It is harder for Mary than it is for me," said Grace, once Mary is out of earshot. "She has to share all of her toys with Sophia, and Mary doesn't always come first."
As if on cue, Sophia starts playfully bashing her plastic toy jar on the floor. Grace gently grabs Sophia's arm and dumps out the toys, helping pick out two of Sophia's favorites. For the whole family, Sophia's needs are always the most important.
But, it wasn't always that way.
From Brazil with love
Monica was born in Korea, and at a young age, moved to Paraguay. A few years later, she moved to Brazil, which she considers her true home.
"Most of my childhood and young adult life was [spent] in Brazil," said Monica, picking up some of Sophia's toys. "If I never met David, I would probably still be there."
Before Sophia ever came into their lives, Monica and David grew their faith at their home together in South America.
David lived in San Diego and only visited relatives in Brazil. Monica said they met briefly at a church function in Brazil, but shortly after, David flew back to San Diego. Although Monica felt a connection to David and they continued to keep in touch, she soon realized how hard distance could be. Before Monica even believed America could be her next home, she would first have to tell David they couldn't be together.
"Our families introduced us, we talked for a bit, and then he was going back to San Diego," said Monica. "After six months apart, my young heart couldn't take it, and I told him I couldn't be with him while he was so far away. Three days later, he showed up at my church in Brazil."
David proposed, unpacked his bags and moved in, ready to begin a life with Monica.
Ten months later, the couple married with rejuvenated faith in their love. Monica again found herself in a foreign country when they moved to San Diego. Once there, David worked as a Tae Kwon Do instructor with his brother, and Monica, utilizing her mastery of languages, began working at a Korean-based bank. For a time, they were just like any other young couple in San Diego, working to secure their future in the city. Soon, David and Monica dreamed of having a family, and Monica became pregnant with Grace.
A few years after Monica gave birth to Grace, she quit her job to attend nursing school. Monica said five years went by in the blink of an eye, and the budding young family grew when she gave birth to a healthy, 8-pound, 4-ounce baby girl.
They named her Sophia.
Battle with the unknown
"Sophia was completely healthy when she was born," explained Monica as she put Sophia in her stroller in the living room. "She passed every exam and nothing was out of place."
For the first four months, everything seemed fine. Then, after visiting the doctor one day, Sophia came home with a fever.
"Most infants suffer from slight fevers, but usually they are fine in a day or two," said Monica. "We just tucked her in between us in bed in case she got worse."
That same night, Monica said she felt her daughter shaking. She woke to see Sophia seizing.
"I noticed right away she was having a seizure," explained Monica, lost in the memory. "I was so scared."
After a brief moment of silence, Monica's eyes tear up slightly and she excuses herself to the kitchen. Moments later, Grace and Mary walk out with homemade pizza.
"It's all organic," said Monica, coming from the kitchen to retrieve Sophia. "Sophia has had seizures after eating processed food in the past, so David and I decided an organic diet would be best."
Monica places Sophia at a colorful, child-sized picnic table in the adjacent dining room, spoon-feeding her a freshly-sliced avocado. She then makes a plate for David, who has just pulled into the garage. Grace and Mary hear the car drive in, and run to greet their dad with hugs.
David, with his towering 6-foot, 2-inch stature, kneels down to greet his daughters. He scoops up Sophia in an embrace and hugs his wife before interjecting with his most poignant memory of Sophia's first seizure.
"What I remember the most is the [intravenous injection] they gave her," said David, standing next to his wife. "She was so little, they had to go straight to the bone with the needle. I'll never forget that."
Throughout that night, David said there was a lot of waiting. Sophia's seizure lasted for two hours, and her parents had no idea what was happening to their little girl.
"It was one of the most frustrating feelings I've ever had," said David, taking a long drink of water before continuing. "I am her father, her caretaker, but I was completely helpless."
After the initial seizure, the San Diego doctors reassured the Hong family, stating some infants may have a seizure, but will never have seizures again in their lives. At the worst, Sophia might have epilepsy, but even then she should lead a rather normal life.
Not long after her first seizure, Sophia suffered a second, then a third. Soon, she was seizing daily, even though she was taking anti-seizure medication.
"It was so aggravating not knowing what was happening," said David. "When we took her to the hospital for more tests, it was aggravating to hear, 'That's not normal,' from the technicians. We didn't know what her condition was, but we already knew it wasn't going to be good."
Then, on their 10th wedding anniversary, doctors made a diagnosis for 2-year-old Sophia's perplexing condition.
Autism.
"We were really confused when they gave us her diagnosis," explained David. "Autistic children can have seizures, but seizures aren't a symptom of autism. The doctors said she had severe epilepsy, and her slow development came from her autism. It sounded reasonable, so we started preparing."
Soon after receiving Sophia's diagnosis, Monica and David had some big decisions to make following the housing decline and subsequent recession in 2008 and 2009. Because so many people were leaving San Diego neighborhoods, David and his brother's Tae Kwon Do school lost students.
With fewer students, David knew it was time for something new.
A continent apart
Although he never planned on joining the Army, David said he felt a calling to the chaplain corps, so he plunged head-first into his enlistment paperwork and headed off to Fort Jackson, S.C., for both Basic Combat Training and Advanced Individual Training.
"Joining the Army was the best decision for my family," said David. "With the educational benefits, I could go to school and pursue my passion in ministry, and the steady paycheck meant I could take better care of Sophia and the rest of my family."
With little knowledge about epilepsy and autism, a newly-pregnant Monica had to take the reins of the household while David was away for nearly a year for BCT and AIT.
"My mother planned to come down and live with me [in San Diego] while David was away," said Monica, taking Sophia from the kitchen to the living room. "Even so, I shut down. With no end in sight for Sophia's condition, and the constant hope it would get better, it just destroyed me when she would seize. Some days, I wondered why God would do this."
Monica said she lived in physical and emotional darkness. She would close the blinds because Sophia would react to the sunlight. She stopped picking up the phone and answering the door at times, so many of her friends began to stop calling or coming around.
"To this day, I still don't have contact with some of my friends," said Monica. "I know a big reason is because we moved from home, but I realize I could still be talking with them now had it been different [in San Diego]."
On the other side of the country, David struggled with the already stressful training environment and being away from his family. He looked forward to receiving mail, no matter what might be in his letter.
"At basic training, it would be bittersweet to hear from Monica," said David. "She would tell me about Sophia, and mention if she had a seizure, but she would always send me photos. Seeing all of my girls together really got me through basic training."
Like Monica, David's faith was also tested.
"Every Sunday I would attend service to remind me of my passion and my dreams, and to pray for my family," said David. "Whenever Sophia would have a particularly rough week, I would go and see the chaplain for guidance."
As if training wasn't hard enough, David also had no one to greet him after his graduation.
"Monica couldn't leave Sophia, and most of my family lives in Brazil or San Diego," explained David, shooing away a nosy Mary. "I didn't mind it, though. I knew I was one step closer to seeing them, so that reinvigorated me."
David returned to San Diego for ten days. He was happy to see his family, but the reunion was short lived as David had to return Fort Eustis ahead of his family to set up the house for Sophia. Monica and the girls stayed with her parents until they too flew to Virginia. With no idea of what lay ahead, the Hong family settled down for a new life in the Army.
Discovering Dravet
"After all of us arrived at Fort Eustis, it was a totally different world," said Monica. "I had my hands full with Sophia and the girls, and David was busy establishing himself at work. It was a hectic first year."
Monica pushes Sophia, wrapped in blankets, in her stroller around the spacious living room floor. Sophia's eyes open and close slowly as she begins to fall asleep for her evening nap. Monica parks the stroller, leaning it against the couch and then sits beside her husband. She falls, and recalls her initial experiences joining the Fort Eustis community.
"In the beginning, I didn't know what it meant to be an Army wife," explained Monica. "I was too caught up in Sophia, I didn't even interact with the community aside from attending services at the chapel."
David, on the other hand, faced challenges explaining his daughter's condition to co-workers.
"I was missing work to take Sophia to numerous appointments," said David, "It was hard to stay motivated at first because I was constantly trying to explain my situation instead of just hunkering down and getting work done."
Eventually, the many referrals and appointments paid off. Two years after initially being diagnosed with autism and severe epilepsy, doctors discovered the long-awaited truth: Sophia had the mutated gene indicative of Dravet Syndrome.
"When the doctors explained her diagnosis, I felt a deep sadness," said Monica. "This meant Sophia wasn't going to get better. This wasn't just childhood epilepsy - she would be this way for the rest of her life."
David recalled one of the first moments he and Monica had alone after the diagnosis.
"We just bawled our eyes out," said David. "A lot of our strength up to that point came from the hope that Sophia would get better, and that was taken from us. We had invested so much time in learning about epilepsy and autism, we didn't know what new challenges this information would bring us."
David also explained how his faith wavered, as if nothing he would do could help his daughter.
"It was one of the only times in my life were I questioned my faith," said David. "I kept asking God, 'What did I do? Why are you doing this to my family?' I felt helpless and abandoned."
Even when Dravet Syndrome seemed unconquerable, David and Monica felt hopeful at the prospect of alternative treatments.
"For six months we tried a special diet plan from the Johns Hopkins Hospital, all the way in Baltimore," said David. "It gave us hope when she stopped seizing as much, but after about two months Sophia's progress faded."
There was an entire year of confusion and adjustment before the Hong family finally found comfort.
It came in the form of a knock on their door.
The light at the end of the tunnel
Sophia wakes up and reaches out to her father. Monica takes off her blankets, takes her out of her stroller and changes her diaper. With a fresh diaper, Sophia goes to her father, and David gives her a hug and a kiss. Sophia then plops down, back at her toys.
"After about a year at Fort Eustis, I joined a local church group," explained Monica. "All of the members helped me find my faith again. They would come over whenever they could to help me. It was like breathing again."
At work, David began to better plan out his work weeks around Sophia's condition. Furthermore, he found the resources he needed to stay educated about Sophia's condition.
"My boss has a son with epilepsy, so he could relate to the struggles I was facing, and that made it easier for me as a Soldier when I had to take off work to tend to Sophia," said David. "I also discovered a Facebook group for people who have loved ones with Dravet. I was able to learn more about the syndrome and not feel so alone by having a daughter with such a rare condition."
After the Fort Eustis community helped the Hong family adjust and reinvigorated their faith, their lives began improving. Sophia also began developmental therapy and started taking more specialized medications.
"Sophia's new medications were beginning to work better, and now she only has night seizures, but not nearly as often as before," explained Monica, returning with a bubbly Mary. "We also found a school for Sophia in Newport News, which is better than the one we had previously in Chesapeake."
Even when David deployed to Korea for 10 months, the Hong parents didn't worry nearly as much as they did when he first entered the Army.
"While I was always concerned about her safety when I was in Korea, I knew Monica would be able to handle the situation with the help of the community," said David. "I could actually enjoy my time in Korea instead of worrying every minute of the day."
Looking towards the future, the Hong family still contends with Dravet, but Monica and David each came to terms with Sophia's future.
"On the Facebook group, one of our members passed away at the age of 40 because of Dravet Syndrome," said David somberly. "For me, I believe God will take care of our little girl no matter what. As a father, it is up to me to give her the best life she can possibly have, and if I do that, I won't have regrets no matter what happens."
Monica said she doesn't focus too heavily on the future, but instead counts each day as a blessing.
"If I think about what could happen to Sophia, it crushes my spirit," said Monica quietly. "I can't try to predict the future. I accept her for how she is every day, and every day I focus on being a good mother to her."
After her parents finish chatting with one another, Sophia picks up two toys. Grace sits beside her, pulling out a few other ones and asking Sophia which ones match. Mary hovers nearby, picking up toys as Sophia playfully tosses them around.
The Hong family knows they will continue to fight an uphill battle against Sophia's condition, but because of their dedication to family and commitment to faith, they don't worry as much about Sophia.
As she watches Sophia pick up another toy, Grace smiles at her parents, knowing her family loves Sophia unconditionally and counts this moment, and every other, as a blessing.