JOINT BASE LANGLEY-EUSTIS, Va. –
November 18 was Sophia Hong's seventh birthday, but the entire month may as well be hers. November is National Family Caregiver and Epilepsy Awareness Month, two relevant topics in the young life of this toddler.
Sophia, second daughter of U.S. Army Sgt. David Hong, Fort Eustis Regimental Chapel noncommissioned officer in charge, has Dravet Syndrome, an unmanageable form of epilepsy caused by a mutated gene.
"She is completely dependent on 24/7 care, so we need to have someone there all the time," Hong said. "She is not self-sufficient and she is not potty-trained. The seizures have slowed her development and regressed a lot of her motor skills. She can walk, but she has a little amount of muscle."
Four months after Sophia was born, she had the first of innumerable seizures to come. Hong's wife, Monica, was pregnant with their third daughter at the time. The job which was supporting Hong's family with was not enough, so he joined the Army to become a chaplain's assistant, but someone needed to help Monica while Hong was in training.
Hong and his wife sponsored his in-laws from Brazil to help raise their first two children.
"My mother-in-law and father-in-law have been there for us as caregivers," said Hong. "My mother-in-law helped raise Sophia since birth. She helped my wife, Monica, while I was in Basic Military Training in 2009. She was pretty much our number-one caregiver from the get-go."
Hong's in-laws and immediate family are not the only "family" he is thankful for. He is also thankful to be part of an organization that cares so much for his family: the Army.
"Since Sophia was diagnosed with Dravet Syndrome in 2010, we've been a part of the Exceptional Family Member Program," said Hong. "It's been very helpful. The respite care relieves a lot of the stress in our family and marriage."
Without respite care, Hong said there would be an overwhelming strain on his marriage and parenthood. Almost every aspect of his family's life revolves around Sophia. She cannot be exposed to many things outside the home, so someone must constantly be with her.
"We wouldn't be able to go to the grocery store," said Hong. "My wife and I would never have time alone, my other daughters wouldn't be able to do a lot of the things they want and need to do, because everything is dictated by Sophia's condition."
The EFMP coordinates morale-boosters year-round, in which the Hong family has had the opportunity to participate.
"Every year, the EFMP rents out a portion of King's Dominion for an entire day and supplies food for their enrolled families," said Hong. "They also host spaghetti nights, movie nights, even one-on-one face-time with the commander and command sergeant major to share our concerns. I cannot express enough how much they do for us."
One of the best things Hong said has happened to his family, because of the support they get for Sophia's condition, happened around Christmas time while Hong was deployed.
"When I was in Korea for ten months, Langley Air Force Base and [the U.S. Army Training and Doctrine Command] actually sponsored my children to get Christmas gifts," said Hong. "That blew me away. It's something that even my oldest daughter talks about. When I talked to them through video-chatting, I saw the number of gifts they got and it was amazing."
After all that has been done for his family, Hong honors his in-laws and the military community during National Family Caregiver Month, as they honor his daughter during National Epilepsy Awareness Month.
"I try to tell my Soldiers that we are very blessed to have the benefits and the leaders we have," said Hong. "I know we are going through difficult financial times, but I am very thankful they haven't touched any of these benefits. We need them."
Hong encourages other families in similar situations to seek support as well.
"There are a lot of families that isolate themselves, purposefully, I know," said Hong. "I understand that, but they need to know there are people here who care. It makes it so much easier."
For more information about the Exceptional Family Member Program, call Marlene Cherrye, Fort Eustis Exceptional Family Member Program representative, at 826-1954, or Ursula Santiago, Langley Air Force Base EFMP representative, at 764-3990.