Sy is Joining A Motorcycle Gang!

Hello everyone! Please come join us for an adventure that you won't forget. This is another person in our lives who has taken her time to help Sy get the care he needs...We are pumped!

POKER RUN TO BENEFIT “SAVE SY’S ESOPHOGUS”
SATURDAY MAY 14, 2011
FIRST VEHICLE OUT AT 10:00 AM (ALL KINDS WELCOME!)
START: AMERICAN LEGION IN CLERMONT, 1063 WEST DESOTO STREET
LAST STOP: CODY JACKS OYSTER BAR IN MINNEOLA - LAST POKER HAND

$10 PER RIDER

SCAVENGER HUNT - 50/50 RAFFLE - GREAT GRAND PRIZE - LIVE MUSIC - $7 PLATED LUNCH - $1 DRAFTS

If you don't know what a poker run is, don't feel bad. We didn't either. Just think of a bunch of people in cars and on motorcycles enjoying the great Florida weather, having a great time, and playing a game all at once. Sy is looking forward to hanging out with a bunch of really cool people and tearing up our county! Also, you can click here for an official description!

So, don't just sit around and let your Saturday be boring! Come do something that is unique and a blast! We dare ya...

It's Just Not Enough...

This blog is quite a bit overdue, but there's something we just have to write.

Our family was speaking yesterday about the long road we've travelled with Sy over the last year. As we look back, we think of SO many people who have helped us get Sy's health to where it is today. It is amazing to look at the past blogs and see what has transpired. Whether it's been help with paying for his elemental juice boxes when he was down to his last few, donating frequent flyer miles or hotel points, holding a super fun auction, bowling with Mr. Duke, giving Sy hugs, and so much more, we have been blessed beyond our wildest dreams while trying to get our little guy taken care of.

There are so many of you who deserve more than a thank you; however, we want to make sure that all of you understand how much we appreciate how you've helped carry our family.

This post is to tell each of you the biggest THANK YOU that we can come up with. Thank you for your caring attitude, support, generousity, time, energy, and love...with all of this, we will continue to push forward and overcome this disease!

A Day To Remember!

What a day! Sy is on the local Channel 13 news today with his favorite all-time, World Champion bowler, Norm Duke! Please watch!!!

http://www.cfnews13.com/video?clip=http://static.cfnews13.com/newsvideo/cfn/Strikes-For-Sy-0228.flv

Also, please take a moment to visit www.strikesforsy.com. Thank you so much!!

Indescribable Love!

This month, our family got to experience something amazing...

As you know, we have struggled to keep a healthy rhythm of life with all the changes happening AND trying to figure out how to continue Sy's treatment in Cincinnati. We had been praying that someone would come along, see Sy's situation, and help us fight the battle to keep him healthy. Well, that person showed up and we cannot believe what she has pulled off! More on her in a minute, but let us first tell you about the spectacular event that was held.

The silent auction was beyond words. We saw a huge group of people come together to put this on and make it so much fun! We thought that there would maybe be 10-20 nice items,  but that expectation was a little low! As the coordinator of this event built momentum, more and more people saw how they could help and brought items to auction to help raise money for our little boy. Someone even went as far as to make our tables look like this was a Hollywood event! People donated a flat screen TV, sporting event tickets, autographed sportswear, Universal Orlando tickets, a week vacation at a huge private beach house, custom art, gift baskets, and so much more! Even multiple local merchants came from all over to donate their services or gift certificates. Over 60 items like this! Over $6000 was raised to be deposited into Sy's trust for travel expenses & medical costs. Thank you to everyone who donated items, volunteered your time, participated in the bidding, and came to have a great time. This means more to us than you realize...

And here's the person who has started all this love...

Her name is Meredith Rosser and she has blessed Sy (and all of us) beyond our dreams. Meredith put so many hours into making phone calls, working out logistics, networking, passing out flyers, posting on Facebook, driving everywhere to pick up items, hiring professionals, and so much more. There are not enough words to express the gratitude and love we have felt. Thank you so much, Meredith. You are our answer to prayer!

And here's the best part...she's not even done yet.

Ready for a Silent Party?

Hello friends! Be sure not to miss Sy's Silent Auction this Saturday at Axum Coffee in Winter Garden, FL from 6-9 p.m. Lots of big crowds, big items, and big fun! Also, we are still in need of 25 volunteers for 1.5 hours. We need help with setup, bidder service, and teardown to make this thing happen!

From YouTube to Real Life!

Well, Sy recently was able to achieve his biggest dream ever!

Last month, we received a phone call inviting our family to the South Lake Kiwanis meeting to hear more about Sy's story and EE. They also mentioned that there would be a special guest that wanted to hang out with our son.

When we arrived, Sy got to meet his bowling hero, NORM DUKE! Sy has spent countless hours in front of the computer watching PBA World Champion, Mr. Duke, bowl perfect games and carefully watching his techniques. After watching, Sy always gets out his favorite foam bowling set and pretends to be Mr. Duke.

Norm had a chance to speak at the meeting and brought Silas up front for a few surprises. Sy received autographed pictures, stickers, an autographed bowling towel & t-shirts, Norm's autographed jersey from last season's PBA tour (that he wears all the time), and a recently released Norm Duke bowling instructional DVD (that has fantastic tips by the way). It was unreal!

After the meeting, Norm gave us another surprise and asked Sy to come to the bowling alley and bowl a few games! It was so much fun to watch this boy who has had food taken away get to indulge in his favorite sport with his favorite bowler. What a day!

Thank you to Gary Tolley (who orchestrated this event), the South Lake Kiwanis, ADvantageous Media Partners (who documented the whole thing), and Norm Duke for sharing your time and love with our Sy Sy!

A Thanksgiving Day Request

Wow! There is so much to be thankful for this year!! I think this has been hands-down one of the most difficult years of our lives but has given us by far the most blessings. Here are just a few:

Jordan’s long time dream of becoming a firefighter has come true thanks to the amazing and humbling support of friends and family.

The birth of our third child when we didn’t think having another baby was possible and her good health despite her early arrival.

Essi starting school and watching her grow into her own little person.

And finally, our on-going journey with Christ… Intensely studying His attributes and how they should be reflected in us… And learning this most practically through none other than our 4 year-old son… Through a Kindergarten lesson, we've learned that "If I stay in Jesus, I will bear much fruit."

Love…Joy…Peace…Patience…Kindness…Goodness…Faithfulness…
Gentleness…Self-control

We have seen Silas display each of these attributes in ways we didn’t think were humanly possible. Of course, he is a typical 4-year boy and he has his moments—especially with his sister. :) But in regards to his disease and what he’s been dealt in his short life so far, we have seen the very hand of God on him. In reality, we have personally encountered Jesus himself. There is something to be said for having faith like a child; we as adults have so much to learn!

This is a little boy who has been sick since the day he was born was but has never complained… Never.

In fact, he presents so well that people have no idea the battle that rages in his little body. It’s easy to forget the severity of his disease when all he does is smile. Really. He even smiles when everyone around him is eating… and often times eating his very favorite things. We know that this is affecting him more than he displays but we pray over him and truly believe that God has given an incredible abundance of these “fruits.” Maybe God knew that in taking away the fruits he could eat, He would be blessing Sy more with the ones of the Spirit.

So, as we will be, we respectfully ask each of you on this major-food centered holiday to stop and say an extra prayer for Silas.

Say an extra prayer of thanksgiving for your health and your ability to eat.

And if you are really up for a challenge, maybe even withhold eating one of your most favorite Thanksgiving treats just to get a glimpse into our Sy Sy’s life. You may be surprised by what you experience! Comment and let us know how it goes.

Thanks for journeying with us and have a Happy Thanksgiving!