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My younger brother, Michael Kobitka, has been struggling his entire life with being ill. My family has been affected by a disease called Marfan's Syndrome and Michael has it as well as other medical issues that have plagued his childhood making him spend a lot of his time in the hospital.
Michael has been diagnosed with Marfan's Syndrome, this is a connective tissue disorder that affects many parts of his body. The area most affected for these children is there heart. Michael has a heart condition where his aorta is enlarged to two times the normal size and mitral valve prolapse. He takes medicine on a daily basis in hopes to slow the process. This condition can lead to aortic root dissection if not managed.
In February 2012, Michael began to have weight loss and fatigue. It was then that he was diagnosed with ulcerative colitis. He has undergone multiple surgeries, admissions, and procedures in order to help manage his condition. He had multiple surgeries to remove his entire colon in hopes that this would alleviate all of his gastrointestinal (GI) issues. He continues to struggle with issues around having no colon and the remainder of his GI tract continues to not work properly. He has needed total nutrition via a special long term IV because he suffers from malnutrition. This IV and all of his appointments and hospitalizations have made it impossible for Michael to attend school. It was decided that it was time for Michael to have a gastrostomy tube placed. This is a special feeding tube where he can get all of his nutrition straight into his stomach. This tube has allowed Michael the ability to return to school. However, his intestines continue to struggle to absorb the nutrients properly and he continues to need hospitalizations to monitor his electrolytes.
In addition he has a pectus excavatum and scoliosis. Pectus excavatum is where the chest wall starts to cave in on the internal organs. His pectus excavatum need to be emergently repaired in March 2013 in the midst of his battle with ulcerative colitis. This surgery carried many risks for Michael given his very serious heart condition. Michael suffers from back pain due to his scoliosis but is not able to have surgery at this time due to his lack of weight gain and overall health and nutrition.
While the Children’s Hospital in Chicago is a great hospital, they have struggled to be able to get Michael's health to level out so that he can focus on his school and his life as a teenager. This is why we are raising funds to take Michael to The Children's Hospital of Cincinnati. The Cincinnati Children's Hospital has a specialized clinic for people who suffer from GI issues (like Michael).
Mary Ellen and the kids (Including Michael) are losing their Health Insurance at the end of January 2014 and will have to figure out other means for paying for Michael's never ending health needs and taking him to see the specialists he needs to see.
Asking for financial support is never easy, but we as a family are at wits end. Please pass this along and give whatever you can to help.
Thank You from all of the Kobitka Family!
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