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The 8th annual Great Steps for NF walk is coming up on June 6th, 2009 at the Naperville River Walk and COLE’S CREW will again take part in helping to raise money that will fund and support Neurofibromatosis research. The goal this year is to raise over $100,000.
Neurofibromatosis! A Big Word! Lots of syllables!
Lots of Problems! Needs a Cure!
Neurofibromatosis is a genetic disorder and involves the uncontrolled growth of tumors along the nervous system. It is the most common genetic disorder caused by a single gene. While not all NF patients suffer from the most severe symptoms, ALL live their lives with the uncertainty of knowing whether they too will be severely affected because NF is a highly variable and progressive disorder. Currently, there is no cure or effective treatment.
Cole is a happy go lucky 10 year boy. He has gained a passion for sports, especially baseball! Cole attended 7 Major League Baseball games in four different stadiums last summer, along with two Kane County Cougars’ games. The highlight of these games came when Cole was able to visit the Boston Red Sox at Fenway Park (where he saw the Green Monster!) and then watching his beloved Cubs defeat the rival White Sox at Wrigley Field. Those two games will forever be embedded in Cole’s mind!
To understand Cole’s memorable baseball season, it’s important that you know the circumstances. On the Thursday before Easter, as Cole was starting his day by jumping on our bed, he turned his head in such a way that it appeared he had a huge wad of gum in his mouth, at 7:00 am! We later found out that that wad of gum was actually a tumor on his jaw. Although surgery scared him, Cole was more bothered by the idea he would be missing the remainder of his Little League season. His dreams of becoming a “major leaguer” were now put on hold. Then the deal was struck! For every game he wasn’t allowed to put on the uniform, Dad promised to take him to a Cubs game.
What we didn’t know was devastating! Cole’s surgeon would have to scrape out a large portion of his jawbone where the tumor had been; the tumor had dissolved several of his permanent teeth and what remained would have to be removed; and, that Cole, a steak loving baseball fanatic, would be forced to drink smoothies all summer and forced to watch the game he loves, rather than participate. This is not what a 10 year old boy looks forward to on summer vacation! A boy needs to be out enjoying his life, not watching it from the sidelines!
You can help. A donation to Cole’s Crew goes to help researchers find a cure so that one day no child will have to suffer.
NF is never predictable! It is highly variable and progressive! The past 3 years have brought Cole challenges no child should have to endure; scoliosis, headaches, seizures, itching, learning disabilities, high blood pressure, tumors and neurofibromas (small visible tumors on ANY nerve ending). BUT, we have HOPE! We need your help to build awareness and help find a cure.
Will you please join us in helping NF, Inc. Midwest reach their goal? Cole’s personal goal is to raise $10,000. No child should have to endure any disorder. We want Cole and others affected by NF to have a bright future. Your contribution will keep our hope alive!
On behalf of Cole, our son, we want to thank you so much for your support.
Sincerely,
Dan & Julie Rutter
You can help by sending your check and donor form to NF Inc. Midwest, P.O. Box 1923, Lombard, Illinois, 60148. Write Cole's Crew Team #907 in the message area or print and complete the donor form http://www.nfmidwest.org/files/Donor_Form.pdf
If you would like information on joining us at the walk in support of Cole – please contact us at 630-466-5118.
Your donations are very much appreciated and they DO make a difference.
Please stand by Cole! Learn about NF! Care about NF!
For more information go to:
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