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In the middle of the night, Jay’lee began to cry. It was completely quiet in the maternity ward, but Jay’lee’s sharp, newborn cries rang out and echoed throughout the empty hallways. Jessica jumped out of bed, her instincts on high alert. As she knew from having her 2 year-old, Neva’lee, babies cry for all sorts of reasons. They cry because they’re hungry, because they’re tired, because they need a change or just the warmth of their mother’s touch. 

As Jessica sleepily changed her daughter’s diaper in the darkness, she couldn’t have known what was causing Jay'lee to cry. She didn’t know then, that her daughter was suffering… that she was in excruciating pain.

The next morning during routine newborn checkups, Jessica asked her doctor to check Jay’lee’s foot. She had noticed something on Jay’lee’s heel the day before, but the nurses had assured her it was just a sore and they were common, just something that happened when newborns sucked on their feet. But to Jessica they didn’t look like sores, they looked like second-degree burns. As the doctor checked her foot, he began to inspect the rest of her body… and found that these suspicious sores were everywhere. 

The Koch family suddenly found themselves “lost in confusion, and overwhelmed with sadness and frustration,” when only one day before they had been celebrating one of the happiest days of their lives: the birth of their second daughter. After running extensive tests on Jay’lee, the doctor arrived at a diagnosis for the concerned family. He explained that their daughter lacked a critical protein that binds layers of skin together. That without it, her skin would tear apart. But it wouldn’t just affect the outside of her body. It would cause blisters in the eyes, mouth, esophagus, and other internal organs. 

Jay’lee had a rare disease called Epidermolysis Bullosa, or EB. And it had a nickname: The worst disease you’ve never heard of. 

Unfortunately, the bad news wasn’t over. As if EB wasn’t rare or horrific enough, Jay’lee had a very severe form of the disease. In fact, she had a mutation no doctor had ever seen before.

Endless pain cannot crush one tiny fighter’s spirit (7 Photos)

In the middle of the night, Jay’lee began to cry. Jessica jumped out of bed, her maternal instincts on high alert.

As Jessica sleepily changed her daughter’s diaper in the darkness, she couldn’t have known what was causing Jay’lee to cry. She didn’t know then, that her daughter was suffering… that she was in excruciating pain…

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“The worst thing about being stationed in Italy was that we had to wait to see Cat Saturday because of the time change!”

Not the words we were expecting from Michael and Brandi Akins, whose son Merrick was about to become Chive Charities’ newest recipient. In preparation for our call with the Akins family, we read their application and the narrative about Merrick’s short life, already riddled with so many painful obstacles, but also so much joy... so much hope. It was hard to believe this biography belonged to a 9 month-old! Brandi and Michael could easily choose to focus on the bad. They could hold onto the grim prognosis; they could be hurt by the many doctors’ words that their son wasn’t going to live. But falling into despair was the last thing on their mind - they were too busy being there for their son. Instead, they wanted to talk about Cat Saturday.

Chivers are the best kind of people.

For Michael, a US Navy Submariner stationed in Honolulu and Brandi, a Kindergarten teacher in Fresno, it was love at first sight. After dating for 3 years they were married and could barely wait to start a family, but their dream eluded them for years as they tried in vain for a baby. Following rounds of testing they discovered there was a very slim chance they could ever conceive. As Brandi and Michael struggled to accept this news, life intervened with an opportunity, as it so often does: Michael was offered a position to be stationed in Naples, Italy. So the couple moved, jumping on the chance to embrace this adventure. It was while in Italy they found out that “the unthinkable had come true” - Brandi was pregnant. As Brandi put it, “There had never been such joy.”

US Navy father learns true courage from his son (14 Photos)

When baby Merrick was rushed to the Emergency Room after he became limp and very pale, the triage nurse tested his blood oxygenation right away. Her face turned as white as a sheet as she looked at the results. “It says 45%,” she whispered, “but there’s no way that’s right. Most people are at 98 or 99%. He’d be unconscious…”

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