www.nickspavilion.com

Please visit us at: WWW.NicksPavilion.Com

Frequently Asked Questions About Nick's Pavilion and Fundraising Efforts

Our fundraising project is nearly four months underway. Along the way, Nick's Ambassadors have been asked many different questions about Nick, our project, and our goals. Some of these questions have been raised multiple times. We thought we'd share them with everyone -- maybe those of you who visit are wondering the same but haven't asked yet.

Q. Wouldn’t it be easier to apply to "Extreme Makeover - Home Edition" to get this project done?

A. Applications were made to EMHE on three separate occasions. The first application, made directly by the family in October, 2005, was rejected. The second application, made on Nick’s behalf by the Make-A-Wish Foundation, was completed in February or March of 2006; it was also rejected. The third application was made by Mid-Valley Neighborhood Improvement Association (our project lead) in June, 2006. EMHE Casting contacted MVNIA directly looking for a “Project Family.” The family was immediately recommended, but was rejected in November.

Q. Why doesn’t the family try “Extreme Makeover - Home Edition” a fourth time?

A. Each application takes approximately 50 hours to plan, acquire and assemble documents, and file the appropriate paperwork. The decision to apply must also be taken in contrast to the hundreds of thousands of applicants that inundate EMHE with requests, versus a final selection of 10-15 families annually. Nick’s Ambassadors feel that our efforts are best spent focused on direct fundraising as opposed to chasing the “easy” way.

Q. What will happen to the funds you have already raised if: 1) the Nick’s Pavilion project dissolves; 2) Nick’s condition worsens; 3) a benefactor donates the entire funds; 4) more materials are contributed and fewer funds are needed; 5) the fundraising project takes longer than expected?

A. The answer to all of these scenarios is the same: any excess funds would revert to MVNIA. Nick’s Ambassadors want to make it clear that Mid-Valley Neighborhood Improvement Association is the sponsoring organization and Nick’s Pavilion is the sponsored project. Thus, MVNIA is the owner of all funds raised on behalf of Nick’s Pavilion.

We would also like to address the other issues raised in these questions. First and foremost, Nick’s Ambassadors have no intention of allowing this project to fold. We are committed to seeing our efforts through to the end. Second, Nick is ALWAYS at risk of his condition worsening. No one -- Nick’s parents, his physicians, his friends, or even he himself -- knows exactly what the future holds for his medical status and needs. Third, we ALWAYS welcome donations -- in any amount -- toward our project. Fourth, any funds raised in excess of our goal or for materials that end up being donated will automatically revert to MVNIA for other projects. Fifth, our fundraising efforts will take as long as they will take. Nick’s Ambassadors have set a goal to break ground on this project in 2008. If the funds are not yet available we will delay the groundbreaking and continue fundraising efforts until we are certain they meet or exceed known costs.

Q. Is it true that Nick is a “Make-A-Wish” child?

A. Yes. Unfortunately, the “Make-A-Wish” foundation is unable to grant Nick’s “Wish” -- a first-floor bedroom -- because they do not sponsor construction projects. In trying to help Nick achieve his wish, Make-A-Wish made an application to “Extreme Makeover - Home Edition” on behalf of the family. As was the case with the other two applications, the application made by Make-A-Wish was not accepted.

Q. I see Nick all the time and had no idea. Is he REALLY this sick?

A. Yes, you will see Nick trying to be a normal 10-year old boy. The Long-Chain 3 Hydroxyacyl-CoA Dehydrogenase Deficiency is very much a REAL metabolic disorder. Because Nick needs certain fats in his diet (for brain development, tissue support, etc.) but cannot eat a “normal” diet, he must take a small amount of engineered fats on a daily basis. These engineered fats change the chemistry from “long-chain” fats to “medium-chain” fats so that Nick’s body can process them. Even with the most careful monitoring of his diet and physical exertion, Nick’s metabolic balance is extremely delicate. His health is frequently in jeopardy and he is often required to remain at home until his health stabilizes. At least once every two months, Nick’s parents are unable to bring his metabolic balance into normal ranges on their own and Nick requires hospitalization to avoid further disability…and on some occasions, to avoid death.

Q. Is Nick’s condition REALLY as bad as you make it sound?

A. Yes. If anything, those of us close to Nick and his family don’t emphasize the precariousness of Nick’s L-CHADD condition seriously enough. Due to the rarity of L-CHADD, it is unknown how many children are affected with the disorder. Further, because Nick was one of the first newborns in Illinois (and likely the entire nation) diagnosed with L-CHADD, he has not suffered any long-term organ damage (which primarily affects the heart, kidneys, and liver.) Nick APPEARS to live a life of normal growth and development because his nutrition and health are so closely monitored by his family and medical care providers. Nick lives a "normal life" to the extent that he is able. While Nick will occasionally overexert himself or not eat as frequently as he should, Nick's Ambassadors always keep in mind: this is a 10-year old boy.

The reality is that this appearance is deceiving: delaying meals, fasting, and too much physical exertion result in elevated levels of “abnormal organic acids” (the long-chain fats and glycerol by-products caused when muscle tissue and stored fat are burned by Nick’s body to maintain metabolic function.) Any acute health condition (such as respiratory illness, digestive upset, allergic reaction or any form of bodily infection) will upset the delicate balance of his health and metabolism. Common illnesses to those of us without L-CHADD are merely an inconvenience; rarely is there potential for a common ailment to become life-threatening. However in Nick’s case, a “common illness” may rapidly progress Nick’s condition from “normal” levels of organic acids to “elevated” levels, then to “abnormal” levels and, if gone untreated for too long, “life-“ or “organ-threatening” levels.

Q. Why doesn’t the family just buy a different home instead of adding on to this one?

A. Nick’s family employs the same money-saving strategies that most every other family does: clipping coupons; buying used instead of new; repairing instead of replacing. All of their efforts enable the family to live normally and without assistance. Saving up for a “new” or “different” home is just not going to solve the issue.

What IS the issue? No matter where Nick lives MUST be handicapped accessible. This means that the home must have at least two ingress/egress points which include a ramp and 36” wide doors. All of the faucets and plumbing fixtures must be within Nick’s reach at wheelchair height. Assist bars (with 27” to 30” ground clearance) must be placed in each bathroom for use of the commode (not to exceed 19” high.) Assist bars must also be installed at both the tub and shower stall - the latter of which must also be fitted with permanent seating opposite the control levers. Any built-in mirrors must be removed and lowered; if a medicine cabinet exists, it must include an accessible shelf no higher than 44” from ground level. The sink must have easy-reach access with “clear space” underneath to enable maneuverability of Nick’s wheelchair. All shelving for of Nick’s belongings and personal care items must be “pull-out” variety to access storage. Counters in both the kitchen and bathroom must also be wheelchair accessible, and a cooking surface should be modified to enable ease of use. Lighting switches must be lowered from standard height (average 47” to 48” ground clearance) to a maximum height of 40”. The home can have no carpeting; only wooden, linoleum, concrete or laminate floors allow for the operation of Nick’s hand-maneuvered wheelchair.

Q. Why isn’t the family paying for this project on their own?

A. In working on this project, Nick’s Ambassadors have learned that in excess of 40% of the family’s income pays for medical expenses. While John has excellent employer-sponsored health insurance, there are costs that are not covered such as co-payments, a high deductible, and exclusions. Barring any serious metabolic complications, Nick is tested at Delnor Hospital weekly to ensure that his condition has not worsened. When he is sick with a cold, intestinal malady, or other health emergency, he must be tested daily.

In addition to actual “medical” expenses, Nick also must take daily nutritional and fatty-acid supplements. Portagen®, made by Mead-Johnson™ Pharmaceuticals is a daily liquid nutritional supplement which supplies Nick with the medium-chain fatty acids that his body can process. While his personal physician would prefer Portagen® to be Nick’s sole source of nutrition, the cost of $268.60 per case of six 1-pound cans makes it cost-prohibitive. Using Portagen® solely as a supplement and beverage, Nick’s current intake is three cases every two months - $805.80 for a two-month supply (costing $4834.80 annually.)

Nick also must take a daily regimen of liquid Polycose® by Ross Nutrition™. This lactose-free liquid is a high carbohydrate source of calories. It is necessary for Nick to keep his metabolic activity consistent. The easily-digestible Polycose® provides the necessary calories in an easy-to-digest formula, keeping his body from having to work too hard to obtain the nutrients. This supplement costs $146.52 per case of six cans and must be ordered four times per year.

Nick’s final daily supplement, as mentioned earlier, is MCT (Medium-Chain Triglyceride) oil. This oil provides the essential fatty acids needed for brain and tissue development. Four bottles of MCT are required per year at a cost of $142.65 per bottle.

The supplements are in addition to careful monitoring of Nick’s caloric intake. His extremely limited diet consists of non-fat foods, the leanest cuts of meat, and high carbohydrates. None of Nick’s foods can be processed with aluminum due to his allergy, meaning that often the most “inexpensive” of high-carbohydrate foods have to be excluded.

Q. What else does this project need? How can I help?

A. Nick's family and Nick's Ambassadors welcome and appreciate any assistance that can be provided toward our fundraising efforts. We need planners and project managers to help us get our projects moving forward. We need "staffers" who can't make the committment of planning a project, but want to jump in to help out at our actual events. We welcome donations in any form that people are willing: labor, materials, cash, discounts...anything and everything is appreciated. We could use another writer to assist with this Blog. We need a printer to print our brochures at a discount rate. We need help to make this happen.

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.

Who are Nick's Ambassadors?

We are a group of friends of Nick, Erin, Susan and John. We come from all walks of life: a nurse; a teacher; a business owner; a former executive; a stay-at-home-mom; a writer; a PTO board member. Some of us are well acquainted already; others will be well-acquainted soon enough. What binds us together is that we all care about this family and care about what the future holds for Nick.

Nick was one of the first newborn-diagnosed cases of L-CHADD in the United States. He was diagnosed before any damage was done to his internal organs, most specifically to his heart or his liver. So no one knows for certain exactly what Nick’s medical prognosis is for the long term. We DO know that Nick will always have to eat a high-carbohydrate diet; that he will never be able to fast; that he cannot diet; that he cannot eat heavily-processed foods, and that organic is best for him.

So with Nick and his family in our hearts and minds, we are going to bring Nick’s Pavilion to life! We absolutely WILL be breaking ground on this project in October, 2007 - because when you see the fire that burns amongst this core group of volunteers, you’ll have no doubt that it can be done. We’ll be calling on friends and strangers alike for assistance. We’ll be cashing in favors of old, and bartering for any goodwill on the horizon. We will be begging, borrowing, and if need be shamelessly pleading for whatever is needed to get this done for Nick and his family. This is a project of sustainable merit.

We will be raising $166,000.00 in funds, goods, and services. And we’re going to get there…we are going to make this dream a reality. And whatever funding and supplies are leftover will be called Nick’s Legacy so that the work done by Mid-Valley Neighborhood Improvement Association can keep on giving!

Keep checking back here frequently for updates! We'll post blueprints, financial achievements, fundraisers, photographs, pleas...any thing and every thing related to Nick's Pavilion!