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This fundraiser ended on 07/05/12

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Friends of Jack uniting to raise funds to pay for her son, 'Lou's travel expenses to Denver or NIH Hospitals for treatment.

~~~7/5/12: The fundraiser ends today and we want to thank everyone for their contributions from the bottom of our hearts.

We had been hoping to get 'Lou qualified for Children's Special Health Care to help with out -of -pocket costs before this trip, but that didn't happen in time. Thanks to Jennifer and all of you, we are still able to take him in for the treatment he needs.

He will be hospitalized from July 18, 2012 - August 1, 2012 at national Jewish Health in Denver, Colorado. The money collected through this fundraiser is going to help us pay for our rental car, one of the airline tickets, part of the hotel stay, some of the many copays and his specialty food while we are there.

In addition to the donations here, many neighbors and family members have contributed in person. One friend donated frequent flyer miles which paid for my ticket completely. Another friend helped to get us a fantastic rate on a rental car. More friends are coming together to donate Marriott Rewards points toward our hotel stay.

The response this page received has been amazing, gratifying and humbling. We reached our goal in just 48 hours and went well over it during the next couple of weeks. The fact that people who don't even know him well have reached out to help has trickled down even to 'Lou. He tells people everywhere we go, "Our friends are helping me fly to Denver."

We are so excited to have the chance to find a treatment or diagnosis that might help make his life more comfortable, I will never forget that you have all helped us achieve that.

I will be trying to write daily updates on his progress and experiences in Denver in case it can ever help any of the other multiple severe allergy families that I work with and who contact me through my blog. You can check for these at:

~'Lou's Mumma ~~~

Please read on if you haven't yet read about 'Lou . . . **

My friend Jack has this amazing little man in her life . . . her son, 'Lou. Her story about dealing with his health issues has moved me to take action and reach out for help . . . Here is 'Lou's story:

My name is Elijah, but everyone calls me 'Lou. I am 4 and a half years old and have 3 big brothers and 1 big sister. Mama says this makes me special because I will always be the baby of the family, but I think I'm special because sometimes if I try really hard, I can run as fast as Superman. Would you rather run as fast as Superman, or fly? I'd rather have the ability to fly, but I ask Santa for it every year and I never get it - so right now my super power is just running fast and being brave.

I was born with food allergies. As soon as I got born, dairy in Mama's milk was making me sick. The more I grew, the more foods I got allergic to. That means dairy, corn, egg, soy, wheat, tree nuts, peanuts, seafood, shellfish, corn, lentils, most beans and sesame. I'm also allergic to a lot of animals and trees and grass. We have to eat different food than other people and we can never go to restaurants or birthday parties or eat food at other people's houses. Mama says it's okay because it makes us much healthier. Sometimes I get sad because I have never had ice cream or pizza or candy, but Mama makes me lots of special allergy-friendly treats that I love. Eating the way we have to costs lots of money so we don’t get to do sports or vacations. Papi says it makes us appreciate what we have even more. Papi is a real superhero. He calls his superhero costume a uniform and it is dark blue with a shiny gold badge.

Most of the time my super powers and brothers and sister help me forget about my allergies. The way mine work is they hurt my skin. I get bumps and sores and eczema and rashes and my skin comes off a lot and it has cracks that really hurt. I always itch and burn, it never goes away and I have always been this way. I don't sleep through the night anymore, because I always have to wake up for a long time to scratch and itch and burn. Staying in one place for too long when I'm sitting or laying hurts my skin. I always have to be moving. Mama says I don't even know what it feels like not to be in pain or itching to death and if most grown-ups could feel what I feel, they would be begging for pain pills. Sometimes germs get in my skin and it gets infected and I have to go to the hospital. Mama says I shouldn't scratch so much and she cuts my nails so short they hurt, but I can't help it. I even scratch in my sleep and she has to put tight socks on my hands. Mama puts lots of things on my skin to help it like medicine from the Doctor and raw shea butter, but it never gets better anymore.

Mama says I'm as brave as a superhero about it, but sometimes I get sad. Sometimes my rash gets on my face and I look different. I don't like to look at myself when my rash is really bad on my face. One time a little boy in my Doctor’s office said I looked like a zombie and I cried. When I got home and Mama told my big brothers why I was sad, they told me that zombies are totally awesome and they wished they could look like a cool zombie like me - they would run around chasing everybody. They got into the costume box and made me a cool zombie costume - Mama said I can wear it whenever I want. Next time if I see that boy again, I will wear my zombie costume and chase him around and he will laugh and scream and play with me.

The Doctors say I have gotten much sicker. Something called my IgE has gone up to 12, 552 and normal is 0 -120. This means how allergic I am. They say I can't start school until I am in remission. I catch sickness in my skin like other kids catch it in their bellies and throats and noses. When my brothers and sisters had Strep Throat last February, it went into my skin and I had to go stay in the hospital. The Doctors kept asking Mama why I wasn't crying and needing pain medicine and Mama said I have never known anything else; I have no idea how bad I should feel. One of my secrets is if I always run and jump and laugh and try to fly, I feel better. I like the wind blowing my hair and skin; it feels good - like scratching without my skin coming off.

Now that they think I am more sicker, the Doctors told Mama and Papi they have to take me to a special hospital far away. I have lots of Doctors; some think I need to go to a place called National Jewish Health in Denver. Others think I need to go to The National Institute of Health in Maryland. Mama is worried because I have to go in July and we don't have time to save enough money. They can do my skin mission there so I can start school in September, like I am supposed to. They say I have Failure To Thrive, but I think they mean Failure to Fly. But I am working on it every day! Mama has friends who want to do a fundraiser to help us pay for the trip. Papi says we shouldn't take charity, but Mama says it isn't charity if we spend our lives helping other people - it's all just people helping each other through hard times and it's a good lesson to teach your kids.

I think I know every Dr. in Michigan. I see a GI Doctor, 2 Geneticists, 4 Allergists, a Dermatologist and an Endocrinologist. I'm pretty sure those last 2 are actually names of dinosaurs, but every time I get excited to go see them, they are still just Doctors. They all think there must be an underlying genetic disorder to my problems because my allergies don't act like normal ones. I never outgrow them and I can never add new things to my diet or I become allergic to them. I also get plenty of great healthy calories and lots of good fats, but I don't grow well at all. Other kids think I am still a baby and if my Mama lets me walk across an aisle in Toys R Us by myself, other grown-ups always try to take my hand and find my Mama or turn me in to the store manager. My Doctor said I might never get big enough to drive a car or wear grown-up clothes when I get big and that might make me sad, so we need to find out why I am allergic to everything and it gets worse the older I get instead of better - and why I don't grow.

My Doctor wrote a letter for the hospital in Denver to help me and she said some words that made Mama cry. They were, "Elijah's life has been crippled by this combination of diseases..." I don't know what it means and Mama says it's nothing I need to worry about - my only job is to keep running and laughing and taking care of myself they way the Doctors say I need to. She says she is crying happy tears because we are finally going somewhere that might be able to find some answers and help make me feel better in my skin.

Our insurance will pay for my hospitalization, but the copay, car rental, allergy-friendly food, plane tickets and lodging for the days I am seen as an outpatient are going to add up. Any little bit of help anyone can give back will help. Mama & Papi are worried about this trip, but I'm not. I'm excited - I can't believe Santa has finally given me my wish - I am actually going to get to fly!
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