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It was a warm August afternoon at the Kash household in Madison, Alabama.  Maria stepped outside to call her 5 children to dinner from the backyard where they were playing.

One of her children, the spunkiest of the bunch, Alexandria, couldn’t be separated from the swing set.  She was challenging her older sisters to a contest to see who could swing the highest. At the dinner table, Maria’s husband Travis served the two youngest boys while Maria returned from the fridge with orange juice. That’s when Maria’s oldest daughter came running to her in a panicked state. “Mom, Alex is doing this really weird shaking thing!”

The ‘weird shaking thing’ turned out to be Alex’s first seizure. One seizure turned into 3 in one month. Soon they were happening every morning and night. Over the span of a couple years, Alex’s condition degenerated to the point where she was having 400-500 seizures some days. The process not only left Alex incapacitated cognitively and physically for days on end, but it also left her parents and doctors mystified.

One thing was for sure, though. Alex wasn’t going to give in. She approached every day with a hunger and zeal for life.  She had, of course, already beaten the odds.

When life takes a swing, Alex swings back (12 Photos)

Alex has been thrown quite a few curveballs in her 11 years. Yet time and again she swings back with a smile on her face. She is happy to live life to the fullest and inspire those around her. Thanks to a group of committed donors, Alex will be able to do just that.

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Isabelle stands in the backyard, contemplating the swing set. Her hands are planted firmly on her hips as she assesses the structure: it’s height, the potential danger, the probability of her either falling or reaching the top. She’d never been up on her own before. For her older brother Eli, climbing these stairs was easy - she’d watched him do it a hundred times. But she’d never done it without help from her mom or dad. 

She knew now, at 6, that she wasn’t exactly the same as the other kids. She realized she needed some special help, some extra supervision that neither her brothers nor her classmates needed. But that doesn’t mean that much to her. She doesn’t know that the world has a name for her ‘limitations,’ that they call it Kabuki syndrome. It doesn’t matter to her that it’s really rare… that few people other than her have it. She already knows she’s special, she doesn’t need a doctor to tell her so. The way she looks at the swing set is probably differently than her peers because to her, it’s a challenge. A chance to do something. A chance to prove herself. 

Before she has decided whether or not she stands a chance of making it to the top… her foot is already on the first step. And then the second. She’s concentrating on nothing but what she needs to do, on what must happen for her to succeed. And then, it seems like it took forever, but she can’t believe it - she’s standing on top of the play set. She looks down at what she’s just done, at what it took for her to get here. Her mom calls her name and she looks, waving and smiling. Mom Heidi’s expression quickly turns from shock to pride… and Izzy can see there are tears behind her eyes.

“Faith is taking the first step even when you can’t see the whole staircase.”

Martin Luther King Jr. said that, and Izzy knows exactly what he meant.

With a community behind her, Izzy takes on the world (12 Photos)

The doctor told Heidi she should let go of any expectations she had had for Isabelle’s future.

But Heidi looked down at her daughter and knew, in a way, he was right. She should let go of her expectations for Izzy’s future… because her future would be different: she would make sure it would be better than Izzy could have ever imagined.

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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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Matthew rolls himself forward in his wheelchair and unlocks the gate to the playground. He sees friends he knows and doesn’t know yet, and smiles at them both. A group of children stop playing in the sand box and run up to him, curious about his chair. They ask if there is something wrong with his legs. Instead of feeling defensive or intimidated at being singled out, Matthew happily responds “I have Spina Bifida!” 

Matthew’s larger-than-life confidence is only a fraction of what makes him so special. It’s as if there is a light inside of him and it burns brighter than anything that happens to him. Everyone is attracted to that light, and no one is immune to his charm. “He had such a confidence,” Matthew’s mom Susan told us, “He never came home and cried about anything.” In fact, Matthew never had time to feel sorry for himself. He was always on the move, playing adaptive basketball, flipping the coin toss at the local football games. He went golfing and even tried skiing, and swam as often as he could. When they would go into town to run errands, Matthew would have to stop every five minutes and say hello to people he knew, introducing them to his mom. When they checked out at the supermarket, Matthew knew the names of every cashier. “He met a lot of people,” Susan remembers, “he touched a lot of hearts.”

Then, tragedy struck.

At birth, Matthew needed to have a programmable VP shunt put in. A shunt is a device that diverts cerebrospinal fluid from the ventricles of the brain to another body region where it can be stored. For 7 years, it worked fine. Then, Matthew suffered a brain inflammation so doctors removed his top vertebrae. A month later, Matthew began complaining of neck pain. Quicker than anyone could have anticipated, Matthew’s shunt malfunctioned and the increase in pressure caused his brain stem to herniate, which led to a stroke. After The Event, Matthew never spoke again. Because his brain continued to swell, doctors had to conduct emergency surgery to remove half his cerebellum. The cerebellum controls all of the body’s coordination and movement. Since the stroke, Matthew can’t smile, he can’t blink, he can’t squeeze his Mommy’s hand. All of his abilities were taken from him without warning.

Doctors prepared Matthew’s parents for the very real possibility that he would not survive. They kept using words like catastrophic and devastating, but Susan and Tom were only half-listening. They knew Matthew had it in him to fight. For the first 48 hours, they held their breath. When Matthew made it through that hurdle, they set their sights on the next milestone. And after 8 days, he opened his eyes. 

We cannot control what happened to Matthew, nor can we ask why such bad things happen to good people. But Susan said it best: “Children who are robbed out of their childhood by a terminal illness or disease deserve only the best out of life.” We wholeheartedly agree. Matthew absolutely deserves the best out of life, and that’s where we come in.

Through tragedy, young champion continues to fight (14 Photos)

After The Event, doctors prepared Matthew’s parents for the very real possibility that he would not survive. They kept using words like catastrophic and devastating, but Susan and Tom were only half-listening. They knew Matthew had it in him to fight. For the first 48 hours, they held their breath. When Matthew made it through that hurdle, they set their sights on the next milestone.

And after 8 days, he opened his eyes…

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