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Finding H.O.P.E.: A military family’s journey

By Staff Sgt. Teresa J. Cleveland | 633rd Air Base Wing Public Affairs | January 31, 2017

JOINT BASE LANGLEY-EUSTIS, Va. --

At first glance, it’s easy to see the Johns family is not a typical military family. Though three children and a dog may seem normal, the six-year-old in a stroller and the dog wearing a vest would clearly catch any onlooker’s eye.

 

U.S. Army Sgt. Matthew Johns, 221st Military Police Detachment military police officer, his wife Nikki, their three daughters Nikita, age 18, Eveylynn, age nine, AudreeAna, age six, and an English lab named Hope, arrived at Joint Base Langley-Eustis, Virginia, in Oct. 2016 due to  a permanent change of station. Together, they have relied on the Army, teachers and each other for support for AudreeAna’s medical condition.

 

Diagnosing AudreeAna

AudreeAna was born at Fort Stewart, Georgia, in 2010 with minor complications not foreseen to cause any significant issues to her growth and development. Cleared to travel shortly after her birth, the Johns family visited family in their hometown of Cincinnati, Ohio.

 

While in the area, AudreeAna was examined for her two-week checkup at Wright-Patterson Medical Center, Wright-Patterson Air Force Base, Ohio. It was there Matt and Nikki first came to learn of their youngest daughter’s medical condition, which was brought to light after AudreeAna displayed irregular movements of her arms and legs.

 

“The physician examined her and looked concerned as he stepped out of the room, saying he would be right back,” said Nikki. “I’ll never forget; when he walked back in the room he said ‘We are referring you to neurology, your daughter is having seizures.’”

 

Shocked and at a loss for words, Matt tried his best to stay calm for his family. For the next week, Matt and Nikki would travel between Wight-Patterson AFB, Cincinnati Children’s Hospital, and back to Ft. Stewart. At just 23 days old, AudreeAna was diagnosed with epilepsy with partial complex seizures.

 

Though this came as a shock, the family was nowhere near done learning of her many medical ailments.

 

“AudreeAna was not growing at the same rate as her siblings or the average rate of children her age; she was still the size of a newborn by her four-month checkup,” said Matt. “At seven months old, she was just starting to be able to sit up in a walker, so we knew there had to be something more than just epilepsy going on.”

 

After working with geneticists, cardiologists, gastroenterologists and nutritionists, at less than a year old, AudreeAna was diagnosed with Ehlers-Danlos Syndrome, a connective tissue disorder that causes seizures, easy bruising, hypermobility and weakness of tissue throughout the body. No two cases of EDS are exactly alike, ranging from constant mild joint pain to costochondritis, an inflammation of the rib cartilage that mimics a heart attack, or even death.

 

While there are six defined types of EDS, EDS Hypermobility is one of the most recognized. Joints that are more flexible than most, unstable joints which are prone to frequent dislocations, and slow or poor wound healing are some of the biggest symptoms within this type of EDS. AudreeAna’s medical condition also caused problems with speech development, giving her the need to use sign language at a young age. Geneticists explained that EDS is genetic, passed down to AudreeAna from Nikki.

 

“I was confused. I was shocked to learn I had it, but mine is not extreme, so I was never diagnosed,” said Nikki. “[The doctor] explained that the way I stand hyper extended and the fact that I’ve always been flexible were sure signs of EDS Hypermobility.”

 

Finding H.O.P.E.

While at Ft. Carson, Colorado, Matt and Nikki made sure AudreeAna was seen on a regular basis. Eventually, medical professionals recommended Matt and Nikki get a service dog to alert AudreeAna, her family or her teachers of her medical concerns.

 

After doing some research, Nikki and Matt found that there are currently no programs within the military healthcare system to assist in providing service animals for dependents.

 

After hearing about the family’s need, local community businesses hosted benefits to raise money for a service animal. Family and friends also chipped in what they could, and after several months of fundraising efforts, the Johns family finally completed their mission. They received an English lab service dog for their daughter.

 

They named her Hope.

 

“We named her Hope because we have her to ‘Help Open People’s Eyes’ about the lack of assistance in getting service animals for dependents. We want to do that over the course of AudreeAna’s life, and Hope’s life and work ability, because they can be trained to do the job great,” said Nikki. “The cost of a service dog tends to turn a lot of needing families away from the idea, but I’ve read so many stories of families with children with certain ailments and having a service dog has helped them immensely.”

 

Trained as a seizure alert, stability and anxiety service animal, Hope travels most places with AudreeAna, ready to notify of an impending medical need. Hope goes to school with AudreeAna, to her doctors’ visits and sleeps near her, alerting those nearby of issues even when she sleeps.

 

“Hope is truly a lifesaver. We saw on our video monitor that she was vigorously licking AudreeAna’s face one night, and when we walked in, AudreeAna wasn’t breathing,” said Nikki. “We went through our procedures to kick-start her breathing again. In all honesty, she was only able to make it through the night because Hope was there to save her.”

 

Exceptional support for an exceptional family

When he received orders to JBLE, Matt and Nikki went into action and immediately began making phone calls to schedule a long list of doctor appointments, making special housing arrangements and notifying her elementary school of the incoming circumstances with their family.

 

As if dealing with the PCS was not stressful enough, dealing with the additional circumstances, new physicians and paperwork involved with a special needs family member and a service animal added exponentially to the Johns family’s stress level. To help with this transition, Nikki and Matt immediately contacted JBLE’s Exceptional Family Member Program through the Army Community Service.

 

EFMP is a mandatory program for all active-duty service members with special needs family members. The EFMP team assists with a new assignment to ensure the family’s needs are met as they PCS.

 

“When a service member with a special needs family member gets orders to PCS, they need that one person at their next duty station they can call; that one person who can help them do whatever necessary to make that move smooth,” said Julie Hu, 633rd Force Support Squadron Army Community Service EFMP systems navigator. “The Army wants to take care of its families and ensure that the gaining base has the necessary medical professionals and facilities available to tend to the specific needs of the family member.”

 

No matter the location, EFMP will make sure it’s a right fit for the family’s needs.

 

“People get frustrated because they get turned away from duty stations while they have a family member enrolled in the EFMP because that particular duty station might not have the specific specialist or medical facility they need,” said Nikki. “But the amazing thing is those EFMP system navigators and coordinators look into the system to make sure that they can provide everything necessary for that exceptional family member. They really make you feel like they are putting the needs of your family first.”

 

“Schooling” others

While many schools have special education programs, not many educators have dealt with service animals in the classroom environment, let alone with children as young as six years old.

 

Keldie Chewning, first grade teacher, and Kelly Craven, special education teacher and school administrators at Gen. Stanford Elementary School on JBLE, worked together with Matt and Nikki to make a plan for AudreeAna’s school success.

 

“We talked a lot about AudreeAna before she got here because she has a lot of specific needs. We wanted to figure out what all we needed to do and what kind of classroom accommodations needed to be made,” said Craven. “Her parents have been very forthcoming with information and taught us a lot so we could make sure to the best of our abilities that AudreeAna is getting what she needs in order to succeed in her education.”

 

AudreeAna’s teachers faced her challenges head on and immediately began doing research.

 

 “It was a whole new learning curve for me. I couldn’t find any educators that I know who have worked with service animals in the classroom, so I read online and I talked to veterinarians and dog handlers to ask for advice on how to approach service animals, specifically those that work with younger children,” said Chewning. “I needed to not only prepare myself, but also prepare 20 other six-year-olds on what to expect, because of course all of them would normally just want to touch the puppy in the room.”

 

Before the Johns family arrived, Chewning discussed the purpose of service animals with her students, teaching them that service animals are there to work – to help people stay healthy. She explained that some service dogs help people with medical issues that cannot be seen outright, and that there are special things the animal is trained to do when a medical issues arises.

 

“It is pretty amazing. Other than a few accidental ‘stepping-on-tail’ incidents, there’s been no real incident of a kid just going over and petting the dog, because the kids are very aware that the dog is there to work and not to socialize with them,” said Chewning. “Hope has become a part of our class and the students tend to notice more when she is not in class as opposed to when she is around.”

 

Craven believes Hope’s presence benefits more than just AudreeAna, but her classmates and teachers alike.

 

“The kids are learning about empathy, resiliency and responsibility from seeing these two working together every day,” said Craven. “You would think this little girl would be fragile but she’s in here every day with an 80-pound dog, and she always has a smile on her face. I love that she is always willing to try new things and with as many adversities as she has had to face; she still really is able to act like a kid.”

 

What the future holds

Though the Johns family has found ways for AudreeAna to live with her medical ailments, their fight doesn’t stop there.

 

Due to its genetic nature, Eveylynn has also been diagnosed with EDS Hypermobility, though her symptoms are not quite as intense as AudreeAna’s. In addition to EDS, Eveylynn suffers from postural orthostatic tachycardia syndrome, a condition in which a change from lying or sitting down to an upright position causes an abnormally large increase in heart rate, or tachycardia.

 

“With POTS, your blood pressure drops while your heart races, so your body is working against itself. We were told as she gets older, chances of her passing out from things like that are going to be very likely,” said Matt. “Chances of her needing a service dog of her own are going to be very high.”

 

While their youngest two daughters experience unusually extreme flexibility as part of their type of EDS, their oldest daughter, Nikita, does not face the medical ailments of her sisters, earning her the nickname, the family “hard pretzel”.

 

As the family transferred to JBLE, Nikita followed to continue supporting her sisters, postponing her college goals to become a sign language interpreter and U.S. Air Force Reservist.

 

“If it wasn’t for AudreeAna’s need for sign language when she was younger, I wouldn’t be planning on the career path I want to pursue,” said Nikita. “I know we had plenty of family and friends I could have stayed with if I wanted to attend college at our last base, but my sisters are like my little munchkins and I don’t know where I would be without them.”

 

A community outlook

Though their journey has not been easy, Matt and Nikki believe the EFMP personnel, Gen. Stanford Elementary School and JBLE community members have played major roles in the amount of positivity in their lives and the lives of their children.

 

“The school is so adaptive; they don’t make it like it’s a burden. They have welcomed our family and our situation just like they would any other family,” said Nikki. “It’s been a very supportive community and that’s what we really love about Fort Eustis.”

 

Despite the amount of time spent in doctors’ offices and home therapy sessions, Matt and Nikki encourage their children to do their best and stay positive every day.

 

“We always say you have to find your way through it. We practice a lot of ‘mind over matter’. When something is bothering them, we first try to find something else to take their minds off of it,” said Nikki. “Our children have really shown us how they can shine. They’re military children, so that’s not easy by itself, but they make it easy – they are really adaptive and it makes my heart so happy to see how much my family can overcome.
Army EDS EFMP Ehlers-Danlos Syndrome Exceptional Family Member Program family Gen. Stanford Elementary School hope postural orthostatic tachycardia syndrome POTS service dog