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Freezin For a Reason at Lake Winnebago
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Freezin For a Reason at Lake Winnebago
Dec. 31, 2011
Chilly New Year’s Day ski show benefits local kids
By Mary Pechar
features@lstribune.net
The Winnebago Water Wizards Ski Club will hold their 6th Annual “Freezin For a Reason” show on New Year’s Day to raise money for three siblings with a chronic, life-threatening bone marrow failure disease, Shwachman-Diamond Syndrome. The ski will take place at 12 p.m. on Lake Winnebago, just south of Lee’s Summit on Missouri 291.
Chris and Vickie Cox are the parents of three children, ages 9, 14 and 17, all diagnosed with SDS. The Cox family moved from Lake Winnebago to be closer to a hospital in North Carolina that treats SDS.
First described in 1964, SDS is a rare disease which mainly involves the pancreas, bone marrow and skeleton, but other organs may also be affected. Next to Cystic Fibrosis, it is the most common cause of pancreatic insufficiency in children.
People with Shwachman-Diamond Syndrome usually have a decreased ability to digest food because the cells of the pancreas in which digestive enzymes are produced do not work properly. Additionally, there is usually a decreased number of at least one kind of blood cells and often those necessary to fight bacterial infections.
As SDS progresses, it usually involves a bone marrow transplant, which can cost upward of $1 million. The family’s finances are already very strained by the ongoing cost of expensive medical treatments and medications, co-pays and deductibles. Health insurance offers very limited coverage of most SDS treatments. The children deal with painful injections and often isolation from other children because of their weak immune system.
The Winnebago Water Wizards want to help the Cox family raise money to help their children by obtaining sponsors for skiers to water ski in extremely cold temperatures on New Year’s Day. There are currently over 30 skiers looking for donations.
If you would like to donate to the Cox family by sponsoring a skier, please e-mail freezinforareason@comcast.net or send your check payable to: Freezin For A Reason, Union Bank, 3700 S.W. Cheddington Drive, Lee’s Summit, MO 64082. Donations are also accepted at any Union Bank location.
One hundred percent of your contribution will go directly to the Cox family to help with the children’s medical expenses. For more information about the Cox family, visit their website at www.coxkids4him.com. To learn more about SDS, visit www.shwachman-diamond.org/info.htm. Lake Winnebago information is available at www.lakewinnebago.org.
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