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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.
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.
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January 5, 2017 - AudreeAna Johns, age six, daughter of U.S.
Army Sgt. Matthew Johns, 221st Military Police Detachment military
police officer, walks her service dog, Hope, across the bridge of a
playground at Joint Base Langley-Eustis, Va. Hope is trained as a
seizure alert, stability and anxiety service animal and travels most
places with AudreeAna, ready to notify of an impending medical need.
(U.S. Air Force photo by Staff Sgt. Teresa J. Cleveland)
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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 HOPE
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.
“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.”
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January 5, 2017 - U.S. Army Sgt. Matthew Johns, 221st Military
Police Detachment military police officer, and his daughter
AudreeAna, age six, walk her service dog, Hope, at Joint Base
Langley-Eustis, VA.. Before arriving to JBLE due to a permanent
change of station, the Johns family worked with the Exceptional
Family Member Program, a mandatory program for all active-duty
service members with special needs family members. (U.S. Air Force
photo by Staff Sgt. Teresa J. Cleveland)
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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.”
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.”
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.”
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.”
By U.S. Air Force Staff Sgt. Teresa Cleveland
Provided
through DVIDS
Copyright 2017
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