Family’s unique journey in EFMP centers on educating Airmen and leaders

John, a technical sergeant with the 34th Intelligence Squadron and Stephanie, a master sergeant with the 707th Intelligence Surveillance and Reconnaissance Group, wake up their children for school at their home April 13, 2016 in Laurel, Md.  John and Stephanie are Airmen who’ve been with the EFMP program for more than 3 years. Their daughters were born with rare cases of Systemic Autoinflammatory Disorder and an Ultraviolet Light allergen known as “Solar Urticaria”. (U.S. Air Force photo/ Staff Sgt. Alexandre Montes)

John, a technical sergeant with the 34th Intelligence Squadron and Stephanie, a master sergeant with the 707th Intelligence Surveillance and Reconnaissance Group, wake up their children for school at their home April 13, 2016 in Laurel, Md. John and Stephanie are Airmen who’ve been with the EFMP program for more than 3 years. Their daughters were born with rare cases of Systemic Autoinflammatory Disorder and an Ultraviolet Light allergen known as “Solar Urticaria”. (U.S. Air Force photo/ Staff Sgt. Alexandre Montes)

John, a technical sergeant with the 34th Intelligence Squadron, applies medical lotion on his daughter Madeline before school at their home April 13, 2016 in Laurel, Md. Madeline was born with rare disorder affecting her low tolerance to Ultraviolet Light known as “Solar Urticaria.” The family has been accepted into a National Institutes of Health clinical trial which helps with medication and treatments aiding in readjustments. (U.S. Air Force photo/Staff Sgt. Alexandre Montes)

John, a technical sergeant with the 34th Intelligence Squadron, applies medical lotion on his daughter Madeline before school at their home April 13, 2016 in Laurel, Md. Madeline was born with rare disorder affecting her low tolerance to Ultraviolet Light known as “Solar Urticaria.” The family has been accepted into a National Institutes of Health clinical trial which helps with medication and treatments aiding in readjustments. (U.S. Air Force photo/Staff Sgt. Alexandre Montes)

Stephanie, a master sergeant with the 707th Intelligence Surveillance and Reconnaissance Group, comb in a topical treatment for her daughter Madeline before school at their home April 13, 2016 Laurel, Md. Madeline was born with rare disorder affecting her tolerance to Ultraviolet Light known as “Solar Urticaria.” (U.S. Air Force photo/Staff Sgt. Alexandre Montes)

Stephanie, a master sergeant with the 707th Intelligence Surveillance and Reconnaissance Group, comb in a topical treatment for her daughter Madeline before school at their home April 13, 2016 Laurel, Md. Madeline was born with rare disorder affecting her tolerance to Ultraviolet Light known as “Solar Urticaria.” (U.S. Air Force photo/Staff Sgt. Alexandre Montes)

Madeline and her sister Gracie wait for their mother Stephanie, a master sergeant with the 707th Intelligence Surveillance and Reconnaissance Group, to open the door before going to school April 13, 2016 in Laurel, Md. Stephanie has been enrolled in the Exceptional Family Member Program because of Gracie and Madeline’s rare disorders, Systemic Autoinflammatory Disorder and a low tolerance to Ultraviolet Light known as Solar Urticaria. The family has been accepted into a National Institutes of Health clinical trial which helps with medication and treatments.  (U.S. Air Force photo/Staff Sgt. Alexandre Montes)

Madeline and her sister Gracie wait for their mother Stephanie, a master sergeant with the 707th Intelligence Surveillance and Reconnaissance Group, to open the door before going to school April 13, 2016 in Laurel, Md. Stephanie has been enrolled in the Exceptional Family Member Program because of Gracie and Madeline’s rare disorders, Systemic Autoinflammatory Disorder and a low tolerance to Ultraviolet Light known as Solar Urticaria. The family has been accepted into a National Institutes of Health clinical trial which helps with medication and treatments. (U.S. Air Force photo/Staff Sgt. Alexandre Montes)

Stephanie, a master sergeant with the 707th Intelligence Surveillance and Reconnaissance Group, and John, a technical sergeant with the 34th Intelligence Squadron keep at height chart of their daughters Madeline and Gracie April 13, 2016 in Laurel, Md. The family is currently enrolled into the Exceptional Family Member Program for their daughter’s rare disorders and has been accepted into a National Institutes of Health clinical trial which helps with medication and treatments. (U.S. Air Force photo/ Staff Sgt. Alexandre Montes)

Stephanie, a master sergeant with the 707th Intelligence Surveillance and Reconnaissance Group, and John, a technical sergeant with the 34th Intelligence Squadron keep at height chart of their daughters Madeline and Gracie April 13, 2016 in Laurel, Md. The family is currently enrolled into the Exceptional Family Member Program for their daughter’s rare disorders and has been accepted into a National Institutes of Health clinical trial which helps with medication and treatments. (U.S. Air Force photo/ Staff Sgt. Alexandre Montes)

Stephanie, a master sergeant with the 707th Intelligence Surveillance and Reconnaissance Group and John, a technical sergeant with the 34th Intelligence Squadron eat breakfast and talk about their day’s events with their daughters Madeline and Gracie. April 13, 2016 in Laurel, Md. John and Stephanie are Airmen who’ve been with the EFMP program more than 3 years. Their daughters were born with rare cases of Systemic Autoinflammatory Disorder and an Ultraviolet Light allergen known as “Solar Urticaria.” (U.S. Air Force photo/ Staff Sgt. Alexandre Montes)

Stephanie, a master sergeant with the 707th Intelligence Surveillance and Reconnaissance Group and John, a technical sergeant with the 34th Intelligence Squadron eat breakfast and talk about their day’s events with their daughters Madeline and Gracie. April 13, 2016 in Laurel, Md. John and Stephanie are Airmen who’ve been with the EFMP program more than 3 years. Their daughters were born with rare cases of Systemic Autoinflammatory Disorder and an Ultraviolet Light allergen known as “Solar Urticaria.” (U.S. Air Force photo/ Staff Sgt. Alexandre Montes)

Gracie, Exceptional Family Member Program dependent of two Intelligence Surveillance and Reconnaissance Wing Airmen takes her morning medication April 13, 2016 in Laurel, Md. Because of this rare disorder, Gracie takes daily clinical trial medication to control the outbreaks. (U.S. Air Force photo/Staff Sgt. Alexandre Montes)

Gracie, Exceptional Family Member Program dependent of two Intelligence Surveillance and Reconnaissance Wing Airmen takes her morning medication April 13, 2016 in Laurel, Md. Because of this rare disorder, Gracie takes daily clinical trial medication to control the outbreaks. (U.S. Air Force photo/Staff Sgt. Alexandre Montes)

Gracie kisses her mother Stephanie, a master sergeant with the 707th Intelligence Surveillance and Reconnaissance Group, after eating breakfast April 13, 2016 in Laurel, Md. Stephanie has been enrolled in the Exceptional Family Member Program because of Gracie’s rare disorder, Systemic Autoinflammatory Disorder. The family has been accepted into a National Institutes of Health clinical trial which helps with medication and treatments. (U.S. Air Force photo/ Staff Sgt. Alexandre Montes)

Gracie kisses her mother Stephanie, a master sergeant with the 707th Intelligence Surveillance and Reconnaissance Group, after eating breakfast April 13, 2016 in Laurel, Md. Stephanie has been enrolled in the Exceptional Family Member Program because of Gracie’s rare disorder, Systemic Autoinflammatory Disorder. The family has been accepted into a National Institutes of Health clinical trial which helps with medication and treatments. (U.S. Air Force photo/ Staff Sgt. Alexandre Montes)

Stephanie, a Master Sgt. with the 707th Intelligence Surveillance and Reconnaissance Group, helps Gracie brush her teeth before going to school April 13, 2016 in Laurel, Md. Stephanie has been enrolled in the Exceptional Family Member Program because of Gracie’s rare disorder, Systemic Autoinflammatory Disorder. The family has been accepted into a National Institutes of Health clinical trial which helps with medication and treatments. (U.S. Air Force photo/ Staff Sgt. Alexandre Montes)

Stephanie, a Master Sgt. with the 707th Intelligence Surveillance and Reconnaissance Group, helps Gracie brush her teeth before going to school April 13, 2016 in Laurel, Md. Stephanie has been enrolled in the Exceptional Family Member Program because of Gracie’s rare disorder, Systemic Autoinflammatory Disorder. The family has been accepted into a National Institutes of Health clinical trial which helps with medication and treatments. (U.S. Air Force photo/ Staff Sgt. Alexandre Montes)

Gracie, Exceptional Family Member Program dependent of two Intelligence Surveillance and Reconnaissance Wing Airmen sits with her friends and sings during her birthday party April 23, 2016 in Annapolis, Md. Gracie currently has a rare disorder, Systemic Autoinflammatory Disorder. The family has been accepted into a National Institutes of Health clinical trial which helps with medication and treatments. (U.S. Air Force photo/Staff Sgt. Alexandre Montes)
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Gracie, Exceptional Family Member Program dependent of two Intelligence Surveillance and Reconnaissance Wing Airmen sits with her friends and sings during her birthday party April 23, 2016 in Annapolis, Md. Gracie currently has a rare disorder, Systemic Autoinflammatory Disorder. The family has been accepted into a National Institutes of Health clinical trial which helps with medication and treatments. (U.S. Air Force photo/Staff Sgt. Alexandre Montes)

Madeline, Exceptional Family Member Program dependent of two Intelligence Surveillance and Reconnaissance Wing Airmen, plays in a foam pit April 23, 2016 in Annapolis, Md. Madeline was born with rare disorder affecting her low tolerance to Ultraviolet Light known as “Solar Urticaria.” The family has been accepted into a National Institutes of Health clinical trial which helps with medication and treatments. (U.S. Air Force photo/Staff Sgt. Alexandre Montes)
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Madeline, Exceptional Family Member Program dependent of two Intelligence Surveillance and Reconnaissance Wing Airmen, plays in a foam pit April 23, 2016 in Annapolis, Md. Madeline was born with rare disorder affecting her low tolerance to Ultraviolet Light known as “Solar Urticaria.” The family has been accepted into a National Institutes of Health clinical trial which helps with medication and treatments. (U.S. Air Force photo/Staff Sgt. Alexandre Montes)

John, a technical sergeant with the 34th Intelligence Squadron, takes a photo of his daughter Gracie during her birthday party April 23, 2016 in Annapolis, Md. John has been enrolled in the Exceptional Family Member Program because of Gracie’s rare disorder, Systemic Autoinflammatory Disorder. The family has been accepted into a National Institutes of Health clinical trial which helps with medication and treatments aiding in readjustments. (U.S. Air Force photo/ Staff Sgt. Alexandre Montes)
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John, a technical sergeant with the 34th Intelligence Squadron, takes a photo of his daughter Gracie during her birthday party April 23, 2016 in Annapolis, Md. John has been enrolled in the Exceptional Family Member Program because of Gracie’s rare disorder, Systemic Autoinflammatory Disorder. The family has been accepted into a National Institutes of Health clinical trial which helps with medication and treatments aiding in readjustments. (U.S. Air Force photo/ Staff Sgt. Alexandre Montes)

Gracie, Exceptional Family Member Program dependent of two Intelligence Surveillance and Reconnaissance Wing Airmen, blows out her birthday candles while her friends and family sing April 23, 2016 in Annapolis, Md. Gracie currently has a rare disorder, Systemic Autoinflammatory Disorder. The family has been accepted into a National Institutes of Health clinical trial which helps with medication and treatments. (U.S. Air Force photo/Staff Sgt. Alexandre Montes)
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Gracie, Exceptional Family Member Program dependent of two Intelligence Surveillance and Reconnaissance Wing Airmen, blows out her birthday candles while her friends and family sing April 23, 2016 in Annapolis, Md. Gracie currently has a rare disorder, Systemic Autoinflammatory Disorder. The family has been accepted into a National Institutes of Health clinical trial which helps with medication and treatments. (U.S. Air Force photo/Staff Sgt. Alexandre Montes)

FORT GEORGE G. MEADE, Md --


(Part 2 of 3: EFMP Ft. Meade series) To learn that your child may be suffering from an uncommon ailment could worry any parent. One particular family is grateful to have the support from the Exceptional Family Member Program, more importantly the strong support circle of friends, family and leadership since the beginning.

The Family

Stephanie, a master sergeant with the 707th Intelligence Surveillance and Reconnaissance Group and her husband John, a technical sergeant with the 34th Intelligence Squadron, are Airmen who’ve been with the EFMP program for more than three years. Their two daughters, Madeline and Gracie, were born with rare cases of Systemic Autoinflammatory Disorder, also referred to as Periodic Fever Syndrome and an Ultraviolet Light allergen known as Solar Urticaria.

EFMP, previously known as the Special Needs Identification and Coordination program, aides military families, with unique medical, emotional and educational needs and permanent change of station (PCS) to ensure that they can be taken care of properly at their new home station.

“Our situation is a little different than most people because our kids are considered ‘undiagnosed,’ it is so rare, they are in clinical trials,” Stephanie said.

Only six months after birth, Madeline began to show unexplainable signs of fever and temperatures over 103 degrees that lasted five days. Doctors tried every avenue to diagnose the issue, but nothing would calm the fever. They speculated that after a few days it may turn into Roseola, mild infection that includes sudden fevers, rashes, swollen eyelids and irritability. Shortly after, the fever dissipated as if nothing happened with no sign of why, leaving the family and doctors questionable.

Stephanie said that from six to nine months old, Madeline was just always sick, and doctors didn’t really know what was going. Madeline’s age made it impossible for testing to be done. It was inevitable that the fevers and sickness would continue.

At 22 months of age, her sister Gracie was born. Unlike her older sister, Gracie’s similar symptoms arose sooner. Stephanie mentioned that it was only hours after bringing Gracie home for the first time, that she began to break out in a fever.

During this time, they were stationed at an overseas base in Germany. Stephanie said that they were fortunate to be surrounded by a very robust military support system.

“When she was three, we were here in Maryland and finally had the doctors at Johns Hopkins to think ‘hey something’s not right.’ They started more in depth lab results,” Stephanie said. “When our second daughter turned two, the same symptoms began happening to her.”

They began to gain knowledge of the illnesses and started seeking answers, there was more to just what they’ve experienced.

After being advised to meet with other specialist, doctors confirmed that they looked healthy, though the lab results showed something else. That’s when Stephanie and John began to seek help through the EFMP. No one really talked to them about the program, making them hesitant due to lack of knowledge of its process.

“My supervisor at the time, Chief Master Sgt. Thomas before becoming the previous 70th ISRW command chief, told me that I should consider enrolling into the EFMP,” Stephanie said. “The doctors said she didn’t need to be hospitalized, so one of the considerations we were doing at the time was taking leave when she was sick for six weeks.”

After trying several doctors they met one who studied Madeline and Gracie’s files. His advice would send them toward clinical trials through the National Institutes of Health.

“We tried it and our children were accepted through the NIH under the Pediatric Inflammatory Disease Section. We weren’t accepted because we are military, only based upon the basis of our children’s disorders,” Stephanie said.

The children began targeted medication and full genetic testing for the disorders. Doctors are currently in the process of mapping genes and isolating the cause. While they continue these trials, John and Stephanie have been caring for their daughters at home with medications to keep the symptoms at bay.

Today Madeline and Gracie have grown accustomed to taking medication in the morning, moisturizers and creams to protect their skin. They carry out their day like most children, doing gymnastics and playing with friends.   

The Program and lessons learned

The steps to have their children enrolled into the EFMP for the first time were not as common as any other families, mainly due to the rare nature of the disorders. The closest EFMP support coordinator was at Andrews Air Force Base, Md.

“We ended up going directly through Andrews EFMP, and the reason was because our kids did not have a diagnosed condition, but they had 18 E.R. visit in one year. If you go to a doctor for the same issue more than six times in one year, you qualify for EFMP,” Stephanie said.

Now enrolled for three years the family still actively pursues information to stay educated on the process. Like most programs, things change over time. John and Stephanie want to make sure that they do not fall behind. A large part of what they have learned along the way is seeking help and communication with your leadership.

Stephanie said that leadership needs to know if you have a medical situation. It should not be confused with knowing the exact situation.  It’s up to each member to determine how much information they want to share. She also mentioned to research everything and to not be afraid of challenging a diagnosis, and find others in the same situation to help you learn more.

“A good tip, is to be extremely proactive, researching all the information,” John said. “We’ve also taken on the fact that we could be a single parent at some point because were both military going TDY, so we prepare and share.”

When an Airman first learns of their dependents illness, Stephanie mentioned that it is key to have realistic expectations. She mentioned that you shouldn’t expect special treatment nor receive special treatment because of your EFMP situation. 

“This doesn’t mean that leadership should not work with you on your situation and help provide solutions to help you be mission ready.  Be honest with your leadership about problems you are having and where they can help.”

Along with being candid and transparent, John and Stephanie believe communication flows downward. Leadership should be engaged with their Airmen if a situation arises. Creating two-way communication to ensure that everyone is taken care of. Not only knowing the specific issue but, knowing the EFMP program itself in case their Airmen have questions or need guidance.

“Enrolling may be the most important part of the EFMP process to help your Airmen get the care and resources they need for their dependents.  It requires a lot of paperwork and additional appointments.  If your subordinate runs into problems enrolling, help them.  Leadership involvement should be early and often if they are having issues enrolling in the EFMP program,” Stephanie said. 

Through the EFMP, Airmen are coded, which can be seen by deployment managers and military personnel flight for PCS. Sometimes giving decision makers the idea that Airmen are unable to fill positions because of their dependents. Stephanie mentioned that their EFMP situation does not define her. She asks that leadership and supervisors treat EFMP coded Airmen like they would any other Airman.

“When my EFMP situation started, I felt a need to stop pursuing my degree.  My supervisor asked me, “if not now, when?”  I now have my bachelor’s degree.  If I think my family can handle a volunteer deployment or other mission items, don’t count me out because of my situation,” Stephanie said.

A final tip Stephanie mentioned is that “don’t be afraid to push me,” but also detect when an Airman is in over their head. Letting them know it’s ok to take a step back, and they have a wingman, strong support circle of friends, family and leadership.