Who is Nick?

Nick G. is a 10-year old boy in Saint Charles, Illinois. He was born with a rare metabolic disorder commonly known as L-CHADD. Nick inherited this genetic anomaly because both parents were carriers of the rare recessive gene. Unknown to his parents prior to his birth, both are carriers of this rare metabolic disorder. Of particular note is that his mother Susan is a carrier of the most common recessive gene for L-CHADD. Until Nick's diagnosis, the gene carried by his father John had never before been observed.

It is likely that Nick's brothers and sister, who were officially listed as SIDS deaths, may have succummed to L-CHADD during infancy before Nick and his older sister Erin were even born. Back in 1994, Nick's mom Susan and dad John lost their first child, daughter Karmyn. Her death was classified as a SIDS death. A few years later, premature twins David and Joshua also passed away and were also classified as SIDS. (At the time the family did not know: L-CHADD frequently masquerades as SIDS.) In Illinois, the same family cannot have more than one SIDS death; to do so is cause for immediate investigation. So in addition to losing their children, Susan and John were investigated for cause in the deaths of their three precious babies. Tissue samples taken by the investigating coroner were somehow mishandled; so while testing to see if L-CHADD claimed the lives of their three other children will never be proven for certain, Susan and John believe in their hearts that this metabolic disorder claimed the three officially-ruled SIDS deaths. It is their legacy that Nick is alive tooday. The tragic legacy of Karmyn, David, and Joshua that led John and Susan to demand immediate post-birth testing, that within three days of his birth revealed that something very serious and very unusual was amiss in Nick's tiny and fragile body.

But L-CHADD isn’t the only condition that Nick lives with. Nick also lives with two additional medical conditions completely unrelated to L-CHADD. The first, is Renal Artery Stenosis. This condition is a narrowing of the main artery which supplies blood to the kidney. It frequently causes hypertension (high blood pressure). Nick must constantly have his blood pressure monitored because of this condition. Second, Nick is allergic to aluminum; it causes him respiratory distress in varying degress, depending upon his exposure to aluminum. So staying away from aluminum sounds like a small problem right? Wrong. Nearly all packaged and processed food contains trace to small amounts of elemental aluminum. This means that eating packaged and processed food is out of the question for Nick. Now - even though the L-CHADD and respiratory issues are unrelated, there is an unfortunate symbiotic relationship: the onset of one frequently triggers the onset of the other. And because a body in distress generally requires additional calories to heal itself: when Nick goes in to respiratory distress, his already-delicate metabolic balance is thrown off and he frequently becomes more sick and more prone to other illnesses because his body can become run down so easily.

Now Nick is a ten-year old boy. He attends public schools. He has friends. He plays Nintendo and procrastinates on his homework. He looks and acts just like every other ten-year old boy you will ever see. When you see him after school, you'll see him running around, much to his mother's chagrin!

What you won't see is later that night...after he has pushed himself harder than he should have, and he has to climb the stairs to get to his bedroom. And his leg muscles hurt more than they do for an average 80-year old and the tears are streaming down his face and he doesn't know if he can make it up those six steps. And on the REALLY bad days, he absolutely can't make it up those six steps. So his mom, this tiny woman who is about to be outgrown by her son, has to carry him up. A trip to the Brookfield Zoo includes Nick's wheelchair, because there is no possible way that his body can negotiate 200 acres without assistance. Walking to school four blocks away is out of the question for Nick. So are competitive sports. So many of the joys that every child should enjoy.

Why Create Nick's Pavilion?

Nick's parents moved to Saint Charles, Illinois before Nick was even born. In fact, the very day they moved: they found out they were pregnant with his older sister, Erin! They live in a "tri-level" house. In our subdivision, their tri-level floor plan means that the entry level has a kitchen, living room, and dining room. The upper level has the only bathroom and three bedrooms. The lower level has the recreation room and occasionally a fourth bedroom or a den/office.

For Nick, this means that going to bed or going to the bathroom always means negotiating stairs. And going downstairs to spend time in front of the television after dinner means negotiating stairs. Approximately one-third of every month, Nick must negotiate his own home from his wheelchair…or his mother must carry him from level to level. And now that Nick is FINALLY gaining weight and thriving after years of worry, the act of carrying him is becoming more difficult.

Why not move to another home? In a utopian world, it would be that easy…but not when a great portion of his family’s income is already devoted to medical bills and prescriptions not covered by insurance.

And we need to remember that Nick must eat a highly restricted diet that eliminates fats and processed foods. We all know it isn't cheap to feed a family. Now try doing it without ANY processed foods, with only fresh and organic (whenever possible) vegetables, the leanest possible meats available. And all of this is done not by choice, but just to keep your child alive, and HOPEFULLY thriving.

So where does this leave the Nick and his family financially? Well, they survive and they somehow make it. But it is not without sacrifice. They clip coupons and shop during sales. They forego "extras" that many of us take for granted like an annual vacation and new clothes, instead taking day trips and buying their fashions used. They drive their vehicles as long as they possibly can to avoid having to incur the expense of a new vehicle. They rely on a social mantra of yesteryear: They MAKE DO with what they have. While they may yearn for more, they certainly do not ask for it.

Until now. With Nick FINALLY growing, with his on-going medical issues, and with his future prognosis unclear, that their house can no longer accommodate their family's needs is an absolute certainty. So all of this to answer the original question: Why create Nick's Pavilion? To build for an independent future for Nick.