I was startled suddenly at 12:15 this morning to the sound of our security system. Now normally when this happens it’s because one of our three Bernese Mountain dogs needs to go outside in the middle of the night and one of us forgets to turn off the alarm. This situation was different, however. My whole family was accounted for upstairs. For some reason I was still not phased, because I found it difficult to believe that someone would break in when we have three huge dogs inside. If there was someone there they were probably scared off by the alarm anyway. The security company called. “Our system says that your kitchen door was tripped. Do you need the police?” At this point I was still trying to get my bearings. To be sure I asked them to come.
I went downstairs to find our newest rescue Pablo panting frantically by the kitchen door. Had he seen something? No, I thought. This is just the result of him being scared to death of thunderstorms. It was extremely windy at this point and thunder was clapping as if someone up there had just brought the house down. We discovered Pablo’s neurosis for thunderstorms the last time one happened. In the interim we had purchased a Bach Flower remedy for him (yes they have holistic soothers for dogs). Apparently my wife had given him a dose before bed. It definitely wasn’t working.
Pablo is five years old.
The police came and asked me why I didn’t just tell the security company it was a mistake. I told him I just wanted to make sure so he politely checked out our back yard. Since I found Pablo by the same door that was tripped, I just imagined he tried to do something to get out in a fit of hysteria, so he must have been the culprit. Poor guy.
So at this point it’s 12:45 AM and we have a frantic dog on our hands. ”More Bach Flower remedy!”, we thought. Too bad he was so beside himself he would not take in any food. Unfortunately there is no simple solution to this. We put him in his crate before the police came just in case they wanted to come inside. He has somehow learned that if he rams his head hard enough against the door of the cage, he can bend the frame and get out. How about the garage? Michelle said no as there is “too much stuff he can get into”. I was slowly realizing what must be done. “You guys go to bed and I’ll handle it.” So I took Pablo in the master bedroom alone (I also brought in Lily our #2 Berner hoping that would comfort him) and tried locking him in the bathroom. I was pretty sure that wasn’t going to work, as I could still hear the panting through the door. And besides, he was panting not for the fun of it, he was scared half to death. Poor guy. After a few head butts at the door (I bet if I let him go at it he would have broken the door down) I let him back in and turned on the TV. He immediately jumped up on the bed and sat on my leg. He had to be close to me. I was afraid I had the TV up too loud as it had to be raised so I could hear it over his panting. He was breathing so hard and fast that I felt I had just put a quarter in one of those old vibrating hotel beds. (I know. Sadly most of you are too young to get that reference.)
So this would finally give me a chance to watch the Jimmy Fallon show. I am never up this late any more. Sadly I was a bit disappointed as it was just plain boring. That is except for when the animal guy took a live badger and pretended to have it attack Jimmy’s face. His expression and reaction were just too funny. I spend the next hour or so flipping channels and waiting for the storm to die down. Eventually it did and we all drifted off to sleep.
So this morning I put an ad on Craigslist: “Lovable, well adjusted, laid back dog needs a good home…” No I didn’t. We all love that dog. He sure keeps it interesting around here.
I recently got a message from one of our ambassadors, Mary Kurek, letting me know that one of the companies she works with wanted to talk to me about a possible co-marketing opportunity. I am always hesitant when I am offered to work with new companies that I am not familiar with, but I eventually listened to what they were offering. The company is CTA Digital, a gaming company that makes accessories for gaming platforms like the Wii, X-Box, etc. They were running this promotion where they would invite one young “gamer” out to Los Angeles for three days to demonstrate their newest “gadget” at the Electronic Entertainment Expo. Not being personally familiar with this sort of thing, this meant little to me but it is HUGE to anyone associated with gaming. Anyway the company was looking for us to help promote this event. Immediately I thought of one of our heroes. 8-year-old Ricky Springer races go-karts to raise awareness and funding for the disease he suffers from. (I recently blogged about Ricky and his condition here.) I couldn’t think of anyone better to do this. I was thrilled to learn that Ricky and his family agreed to do it, and the folks at CTA were also generous enough to give BOTH charities a significant donation, in addition to paying their expenses. Thanks so much Mary for helping us make that connection, and for convincing me to listen to you. And also thank you to CTA, not only for the donations but for giving Ricky a wonderful new platform to spread awareness for his cause.
This poster will be displayed in CTA's booth at the Expo.
Besides what this partnership means to Kids Are Heroes and CTA, I really want Ricky to be able to enjoy this. He deserves to just be a kid for once. Because of his disease he has never flown before, as many more complications that you would never think of enter into the equation. His mom related to me just this morning that she will have to get special permission to take his special formula on board the airplane, as it cannot be checked and he must have it. She told me that he cannot even have regular Tylenol, that he must get a special kind so she is grateful that CTA put her up in a hotel next to a Trader Joe’s, which is a store she can readily purchase the special things that Ricky requires. I smile when I think of the wonder in his eyes as he enters the expo seeing all the huge displays and new devices. Knowing how much he has suffered in his life at such a young age, I am excited to hear about all the fun he will have, being the star of the show demonstrating CTA’s latest technologies. If you plan to be at the Expo meet Ricky in person at CTA’s booth which is #4500.
UPDATE 5/29: Up until now I have been unable to tell you what it is exactly that Ricky will be demonstrating. Now that the press release has been issued I can tell you. Ricky will get to demonstrate CTA Digital’s brand new Inflatable Race Kart for Wii!! That is one of the main reasons that Ricky is so perfect for this opportunity. And let me tell you how excited he is to be one of the first kids to try it out. CTA is really happy to have him as their ambassador for this event.
So Ricky now has a schedule that rivals many other jet-setters. From June 15-17th he will be in Los Angeles at the Expo, only to return to racing the following weekend. Then the week after that he and his family will pack up the car and head to Gettysburg, Pennsylvania for Kids Are Heroes Day at Boyd’s Bear Country on June 26th. We really look forward to meeting he and his family at that time.
Ricky’s Current Standings:
2010 Laurens County Speedway Points Series: 1st Place in Points
2010 WKA Georgia Division Dirt Series: 1st Place in Points
Last week I told you about Ricky Springer, and how he overcomes adversity to become a hero. We have several heroes who have had their own crosses to bear and yet have flourished and helped others at the same time. Well this morning I was sent a video by Jacob’s Dad, a young boy who suffers from Ulcerative Colitis. This one becomes personal to me, as I myself have this same affliction.
From his dad:
“…on behalf of the Crohn’s/Colitis Foundation of America – Jacob was asked to represent Maryland on World IBD Day in seeking the co-sponsorship of the IBD Research & Awareness act (S.981, H.R.2275) up for vote this summer. This provides $35B in IBD research over a 5 yr period to include a key focus on pediatrics. He spoke with the offices of Sens. Cardin (D-MD), Mikulski (D-MD), Rep. Dan Maffei (D-NY) and E. Cummings (D-MD) – after his speech, there wasn’t a dry eye in the place – we are SO proud of him and his brother Alex who couldn’t have represented us better! In fact, Rep. Maffei’s office asked for a copy of the speech to show to constituents in support of the bill. Feel free to write your legislators in support of the bill!”
This post is a bit different than I am used to writing, but I felt it to be important none the less. I just received an email from one of our heroes’ moms that explains in detail the affliction her son suffers from. The reason she wrote it was not to gain sympathy, but more to help other people that may know someone who is suffering with something similar as often the disease is misdiagnosed. I decided to post it for the same reason. The hero’s name is Ricky Springer and he is just eight years old. He races go-karts, and all the money he raises goes to research to help find a cure for his disease. Here is his profile on the Kids Are Heroes web site.
From his mom:
“As you may know, our son Ricky suffers from an Eosinophilic Gastrointestinal Disorder (EGID) called Eosinophilic Colitis(EC). This disease, which only affects his colon, renders his body unable to tolerate many food proteins. For Ricky, his symptoms are like that of a lower GI virus when he eats foods that his immune system has decided are “invaders”, like a virus would be. He experiences non-stop abdominal pain and cramping as well as diarrhea.
Ricky suffered in horrible pain for the first 21 months of his life. We took him to 14 pediatricians, 2 gastroenterologists and 2 allergists, and none of them could tell us what was wrong. We got answers like “This is just the way he poops”; “He’s just a miserable baby”; “You must be giving him something to make him sick”. I was accused of Munchausen Syndrome by Proxy (a form of child abuse in which a parent induces a real or apparent symptoms of a disease in a child) and poisoning my child. He looked fine. He looked healthy. Yet he was not fine, or healthy. It took my resorting to spending WEEKS searching the internet, trying to figure out what was wrong with him, to come up with a plausible explanation. Fortunately, thanks to the help of The American Partnership for Eosinophilic Disorders (APFED), I was able to locate a doctor at Cincinnati Children’s Hospital who was willing to figure out what was wrong with Ricky. And finally in June 2003, Ricky was diagnosed with EC. For the next 1 1/2 years Ricky would live off of an Elemental Formula, that he could drink or receive through a feeding tube in his stomach.
Today, Ricky is doing GREAT! We are at the point that unless he has issues, we no longer need to visit Cincinnati every three months like we did for years. He is eating a full range of foods, and can even eat out, at Longhorn or Outback!!!
In October 2009, our oldest son, Rusty, was diagnosed with Eosinophilic Esophagitis, the same disease Ricky has, but for Rusty it affects only his esophagus. Rusty’s symptoms mimic that of Reflux, causing pain so severe in his upper body that he feels like he can’t breath, or is having a heart attack. Reflux medicines do NOTHING to help, as it is not stomach acid as with true reflux causing these symptoms, but actually his immune system reacting to food proteins. Fortunately for Rusty, I had the knowledge to suspect that he was suffering from the same disease as Ricky. Still though, our own pediatrician argued that he could not have EE and tried to dispel my concerns. We immediately took Rusty to a very knowledgeable GI in Greenville, SC. After extensive testing, we were able to come up with a list of foods that appeared to “trigger” his immune system. We have since removed all of those foods from his diet and he is doing better. It has been rough emotionally though…dealing with a teenager and telling him he can no longer eat tacos or pizza—NOT because of the acidity, but because they contain his “triggers” like soy, corn, bleached wheat flour, etc. However, we are blessed to know what foods set off his immune system and he did not need to suffer like Ricky did.
Because of my desire to see NO other mother struggle like I did to get answers, I have worked as a volunteer for APFED since Ricky’s diagnosis. And Ricky, whose passion is that no child should suffer like he did, initiated the Racing for a Cause campaign, where he uses his racing as a platform to educate others. It is our family’s passion to make a difference for others who are suffering with this disease and trying to get an accurate diagnosis and treatment.
I have attached a Fact Sheet about Eosinophilic Gastrointestinal Disorders. Current estimates are that 1 in 1200 people are living with this disease….MOST of who are misdiagnosed with other issues such as Reflux and Irritable Bowel Syndrome and not receiving the appropriate treatment. It is very likely that you WILL encounter another person who is living with this disease. Please take the time to read the Fact Sheet and learn more about EGID. YOU may be able to help someone who is suffering!!!!
We appreciate all the support, thoughts, and prayers we have gotten from our friends and family as we have traveled this road with our children. Thank you for taking the time to read this letter and learn more! You can also visit www.apfed.org for more information about Eosinophilic Disorders and www.springerracing.com to learn more about Ricky’s Racing for a Cause campaign.
There are many contests that are going around these days, especially with the proliferation of social media. ”Vote for me!! Vote for me!!” cries are heard all too often. But sometime they results can have powerful repercussions. And sometimes an individual merits the rewards that are being vied for.
I truly believe that such is the case with our hero James Brooks. His passion is to save the gorillas of the Congo and people trying to protect them. In his own words:
I am James and I am 13 years old and I really hope you can vote for me for the 2010 “Youth in Action ME to WE Award.” I am one of three finalists in my category and the winner will be decided by an on line vote from May 13-27, 2010.
I have done all I can to help apes and the people who live near them. My 1000classrooms project gives an income to widows of Park Rangers who have been killed protecting gorillas in the Democratic Republic of the Congo; feeds hungry children; protects endangered gorillas; and saves their rain forest habitat. Also, it educates 1000’s of Canadian kids about the threats to people, animals, and the environment in Africa. You can read more if you visit www.1000classrooms.org.
I really want to win this award because there will be a $5000 donation to a charity of my choice and the widows, kids, and gorillas REALLY need our help. Also, it will get more attention to the horrors in the Congo and raise even more money. Your vote could save lives! Also, I think ME to WE is a great organization.
Thank you for considering voting for me. PLEASE PASS THIS ON TO ALL YOUR FRIENDS WHO MIGHT VOTE!
So please take a moment and support James and what he is doing. He has been working hard at this for quite some time, and I truly believe he deserves it.
I of all people should know the difference. In 2006 my dog Charlie started a non-profit called Wags for Hope, which is a local organization whose members take their animals to nursing homes and hospitals to comfort the residents. Having worked in the computer industry for longer than I’m willing to admit, I know that normally for profit organizations take on the “.com” extension and non-profits are usually “.org” as it applies to their web address. I would even sit in petty judgment when I saw a website that was classified improperly. So how did I get myself in this fix? We are a 501(c)(3) charity and our web site ends in “.com”.
As many of you know it was an interview that Charlie Rose conducted with Sir Richard Branson in February of 2008 that was one of the the initial catalysts to get Kids Are Heroes started. It had a profound affect on me. He spoke of social entrepreneurship, which is not charity. It is using knowledge, skills and determination to solve world issues instead of throwing money at a problem. Many social entrepreneurs are just that, entrepreneurs. Tom’s Shoes is a great example of this concept. For every pair of shoes sold, one pair is given away to someone that needs it. Although they perform acts that could be considered charitable, they are not a charity. This was the model that we started to build when Kids Are Heroes was formed. We began with KidsAreHeroes.com because quite frankly, I was trying to create a job for myself. Nothing would make me happier than to make this my life’s work, but since I am not independently wealthy I cannot do that without somehow generating income for myself. So that is why it started as a “.com” organization.
We started building the web site, created marketing materials, banners and the like. The more we did that the more the “.com” part of our site became ingrained in our marketing. Then in July of 2009 it was time to form a corporation. This is not usually how things are supposed to be done. I have read many articles suggesting the corporation and the 501(c)(3) application be completed before anything else begins. However, if you know me you know that I don’t always follow a trail. Before I spent money on the organization I wanted to make sure it was viable. By July of 2009 it was time. We asked for legal help because I didn’t want to mess this up. It was too important. My lawyer suggested we form a non-profit corporation, as he felt we would have more of a chance of being funded. I realized he was correct, because for over a year the “entrepreneur” part of the equation wasn’t going so well. We weren’t making any money nor were there prospects of making any. The reason for that is there was no focus whatsoever on being profitable. We were so convinced that what we were doing was the right thing to do we concentrated on building the organization through social media and other channels. We wanted to recognize more heroes. I have discovered that true wealth doesn’t come in the form of money. I have gained wealth through this organization, its heroes and their families. I have gained wealth from all the new connections we have made because of the organization. This kind of wealth will never pay for a yacht or even a cracker for that matter, but this kind of wealth is far more valuable to me.
So we formed a non-profit corporation and a few months later applied for our tax exempt status. We received that in March of 2010. So now we have a 501(c)(3) charity that is a “.com”.
Luckily for us we claimed the “.org” domain name a long time ago. As a matter of fact if you type it in it will go to our web site. But to make things less confusing, we will be slowly changing over to “.org”. Then all will be right in the world. Please pardon our dust as we make this change.
At the same time we will be changing from Kids Are Heroes™ to Kids Are Heroes®. We recognized early on that Kids Are Heroes has the ability to become a huge organization one day. I wanted to make sure we got the name trademarked so no one else could snatch it up. That was a bit of a bumpy ride, but we made it. We overcame all the obstacles now we are just waiting for the mark itself. One of the “bumps” was that a company accused us of focusing on the word “Heroes” as in our logo the words “Kids Are” are much smaller. They were afraid that we would eventually drop the “Kids Are” portion of our name. That couldn’t be further from the truth. We will always focus on kids and we will always be “Kids Are Heroes”. I had never noticed that before they mentioned it, and they were right. We did some work on the logo to preserve MaryMargaret’s original artwork yet enhance the words “Kids Are”. The new site will feature this slightly altered logo. Here’s a sneak peek:
So that is the long-winded answer why we are a “dot com” right now. Now we go back to doing what we do best, and that is featuring new heroes.
UPDATE: We’ve been busy over the weekend and now our web site does end in “.org”. We have lots of marketing materials to update, but at least we are on our way.
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