When that happens, you can only try to look for purpose and meaning in it all. If it’s going to happen, it’s going to be for something.
When Austin and her husband Joshua, a 19-year active duty service member in the Army, decided to adopt a baby, they knew in advance that she would have special needs. With two older sons at home, they were ready to complete their family and welcome a daughter – and when Melanie finally came home, that dream became a reality.
Melanie was born with Down syndrome and is deaf, but her family already knew all of that when they adopted her. They were prepared and thrilled to have their daughter. It was the other diagnoses still to come that would push them to their limits.
Shortly after Melanie was born, her parents grew concerned that she was not developing normally. Melanie was sleeping all day, unable to hold her head up, and could not sit or walk.
Joshua and Austin couldn’t shake the feeling that there was more to her diagnosis than Down syndrome. They pleaded with a developmental pediatrician for an explanation behind Melanie’s symptoms. The doctor told them “She’s never going to walk, never going to talk. I never need to see you again.”
They were stunned. And it would take the unthinkable to change the doctors’ minds.
During a visit with family in Arizona, Melanie became sick, agitated then unresponsive.
"She had thrown up once and then we couldn’t wake her,” Austin said. “When we could rouse her, she would fight us. She was hitting and pulling away. So we rushed to the ER."
Melanie suffered a medical emergency, drifting into a coma due to low blood sugar. After additional testing and lots of advocating by Austin, a metabolic geneticist finally diagnosed Melanie with Ketocic Hypoglycemia.
For Melanie, her blood sugar is harder to control than if she had diabetes.
Although this news came as a shock to the family, they were incredibly relieved to finally have a name and a plan. The key to keeping her healthy? Cornstarch. And yes, you read that right.
“Believe it or not, that simple thing, cornstarch, maintains blood sugar,” Austin told us.
Adding cornstarch to her diet was so effective, that Melanie was able to walk by age 3 when less than a year earlier, she couldn’t hold her head up. She was more alert and even able to speak a few words.
Unfortunately, the success of the treatment was short-lived, and Melanie began forgetting the spoken words she had learned and was having difficulty walking. Then came the seizures.
Doctors couldn’t understand what was going on or why Melanie was regressing, and all were unsuccessful in determining the cause of her seizures. An MRI would have given them the answer, but Melanie had cochlear implants, which created a safety concern for the test.
Austin kept pushing, kept pleading for the medical team to move forward with an MRI, but to no avail.
At this point, Joshua was on military orders to move to Los Angeles.
Due to the difficulties associated with the COVID-19 pandemic, and waitlists for medical providers, Melanie was not able to get an MRI done for another six months after her seizures began.
By the time an MRI was finally ordered, the results revealed a devastating tragedy.
Melanie had Moyamoya disease, a rare, progressive disorder caused by blocked arteries at the base of the brain in an area called the basal ganglia. For those six long months waiting for medical appointments and an MRI, Melanie’s health was deteriorating. Had it been caught sooner, things might have turned out differently.
But her family couldn’t think of the what-ifs. Only the what-nows.
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Melanie’s Moyamoya disease was so advanced that she was considered stage 5/6 on the 6-point scale. Just days after her diagnosis, she suffered a catastrophic stroke that left her entire right side paralyzed. She lost the ability to communicate in ASL, couldn’t swallow, and couldn’t hold her head up.
The neurosurgeon told Melanie’s parents that Melanie needed brain surgery, right now. While this surgery was potentially life-threatening, it was her only chance of survival. The hospital told Melanie’s family that they would notify them if Melanie didn’t make it so that the family could say their goodbyes.
Her older brother even left college at LSU to spend what time she had left with her, telling his parents, “I want her to be with the whole family.”
After 15 hours, Melanie miraculously survived the surgery. As she recovered in the hospital, Melanie began exhibiting symptoms of medical trauma, and she was later diagnosed with medical PTSD. Melanie and her family were pushed to the brink.
But instead of backing down or curling into a ball (which, on some days, she wished she had), Austin jumped into action. “I just thought, ‘If we’re going to lose her, it’s going to be for something,’” Austin said.
She decided to help other military families like hers who had a loved one with special needs, but who were falling through the cracks or becoming victim to loopholes through the Army’s Exceptional Family Member Program (EFMP) – like their family had.
The EFMP is a mandatory enrollment program for soldiers on active duty who have a family member with a physical, emotional, developmental, or intellectual disorder that requires specialized services.
Essentially, the Army’s objective is to ensure needs can be considered in the military personnel assignment process. As written, the overall goal of EFMP is “to help families accompany the Service member to the right duty locations, not to exclude them.”
But sometimes, those good intentions fall short.
Austin, along with other advocates just like her, have testified before Congress about families issues ranging from difficulty in getting their health care providers and support system in place after a permanent change of station move; being transferred to locations without adequate medical and educational resources to meet their needs; and perceptions surrounding EFMP, and whether it could negatively impact a service member’s career.
After moving seven times, the Carrigg family was used to battling for Melanie’s care. They just didn’t think it should be so hard, especially with the EFMP. So Austin went on to create a non-profit organization to help Melanie and others like her called Exceptional Families of the Military.
“My hope is that this is Melanie’s legacy,” she continued.
It’s going to be for something.
Melanie is 10 years old now, and has faced more than most of us could imagine. She also has more spunk and determination than most of us, too.
She loves to swim and would be outside all day every day if she could. She’s also a really good cook - “real cooking, not play cooking,” Austin laughed - and records hours of videos daily, just walking around the house or filming whatever she sees.
The spunk comes out in other ways, like when she didn’t want to go to speech therapy. Because Melanie is deaf, if she closes her eyes, it’s incredibly difficult to communicate with her – almost impossible. So when she went to speech, she would lie on the floor with her eyes closed until the time was up. You have to give her creativity points for that one!
But, by far, the best thing in Melanie’s life is her Devon Rex cat named Sophie.
“They are best friends,” Austin told us. “She’ll do anything for Sophie, and Sophie is super attached to Melanie, too. Because of Melanie’s medical PTSD, we’ll encourage her through doctor visits or appointments by saying, ‘If you do this, we’ll go home to the cat.’”
As such a huge advocate for military families, it makes sense that Austin found Chive Charities through another one of them – a previous recipient named Awsten and her mom, Ceasarae (who also happens to be a member of our Advisory Committee.)
They told Austin about how they had gotten a wheelchair-accessible van through our organization and that we were ardent supporters of military families like theirs.
As Melanie’s condition has progressed, transportation has become a massive challenge. Her medical PTSD is partially triggered by vehicle transfers, as she is constantly afraid of going back to the hospital.
She’s also growing and getting heavier, and the physical toll of lifting her in and out of a car is even more significant. Honestly, it will be life-changing in more ways than we can list here. It will mean everything to them.
Because of your contributions, Chive Charities can make that life change happen. We purchased a black 2020 Chrysler Voyager from our partners at AMS Vans for a total impact of $49,504.
Austin has already impacted so many families through their experiences with Melanie. It’s time she gets a little of that back. Life can be almost too much to take sometimes. Senseless. Random. Brutal. But it can also be filled with hope, inspiration, and betterment. People watching out for people, spreading love and support to those in need.
Like Melanie has taught us, no matter what, it’s going to be for something. Help us continue to pay it forward and make the world 10% happier. DONATE HERE.