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Early in 2001, Kara experienced the first of many surgeries. Diagnosed with Chiari malformation, and then syringomyelia, Kara underwent decompression surgery after seeking opinions from several doctors. Not long after the procedure, she began to experience headaches and shakiness in her arm. Exhausting resources in her hometown forced Kara to go out of state for help. Medical testing indicated her previous surgery was not enough. Shortly after these tests, and a year after her first surgery, Kara had a second decompression. After the long drive home, swelling developed at the surgical site. A month later, her family repeated the 11-hour trip to repair a leak that developed in the dura. When they arrived home after this procedure, they realized the swelling reoccurred. During the Ketchesin's third trip, doctors performed two repair surgeries within weeks of each other. Obtaining no relief, Kara endured a sixth surgery to have a V-P shunt put in. Although Kara has experienced some relief from pain during her ordeal, it is far from gone.
Throughout the series of surgeries Kara endured, the impact she and her family had on people became clear. Every few days, her dad would update friends and family on Kara's condition via e-mail. It wasn't long before the people on the list banded together to help. Since most of Kara's surgeries took place outside of her home state, large financial costs incurred. Friends and family of the Ketchesins quickly took action. One person devised a method in which people could donate directly to the Ketchesins. Collection containers placed at local gas stations took in donations, two fundraiser dinners were held where the video, "We Are Special Too," was shown, and there were other fundraisers as well. The number of people working together to help Kara and her family was heartwarming, a true testament to Kara's character.
Attendees of the 2002 ASAP Charity Ball and ASAP's 2002 medical conference saw the video, "We Are Special Too." This touching presentation followed Kara's and another young girl's journeys through surgery for SM and Chiari, from pre-op to post-op. Kara and her family initially decided to do this video to help ASAP in its fight against SM and Chiari. They also show this video to friends and family to educate them on what Kara went through and to raise funds for ASAP.
As if Kara's contribution to the video was not enough, she donated three of her remarkably beautiful paintings to ASAP to auction off at the Charity Ball and the annual medical conference. Collectively, her paintings have raised $2,750 for ASAP. In the hopes of further success, Kara plans to donate two more paintings to this year's Charity Ball. They will undoubtedly do just as well as, if not better than, her previous paintings. Kara's immense talent is rarely found in a person of her age. People who have the chance to view her paintings will not be disappointed.
Kara and her family find it so important to help ASAP in any way they can that the donated paintings come directly off the walls of their home. Kara does this for ASAP because she feels it is important to help support ASAP's mission. She believes that ASAP is a very important element in the world of Chiari and syringomyelia because of the support this organization offers people who suffer from these disorders. She likes that a member can talk to other people who have SM and/or Chiari and ask them questions. The best comfort Kara receives from ASAP is the knowledge that ASAP is committed to research of these disorders.
Aside from ASAP, Kara is involved in many activities. She enjoys being in the sixth grade and is on her school's student council, yearbook, art club and a chorus group. Of course, she also enjoys painting and drawing. Kara estimated that twenty of her paintings adorn the walls of her home.
Kara's plans for the future include continuing her painting and drawing. She also mentioned that she would like to be a neurologist and specialize in syringomyelia and Chiari. Kara's reasoning for this is that she already knows a lot about this field, as well as the fact that she understands the experiences that stem from these disorders. However, she made it quite clear that she wanted to be a neurologist not a neurosurgeon to avoid regular contact with blood.
Due to her experiences with these disorders, Kara has learned not to take life for granted. Because of her series of neurosurgeries, she has learned never to give up hope and to keep her faith. She has found that from this ordeal, she has developed into a strong person and has more faith in God. She also feels that her family has become a great deal closer due to this experience. She advises other people who are in similar situations to always keep faith in God and to never give up.
At a very young age, Kara dealt with hardships that few people will ever have to face. She stayed strong and fought hard. Even at the age of twelve, Kara found the ability to step out of a very difficult situation and continue to smile. This type of situation would be difficult for even an adult to remain positive. This remarkable girl has a heart of gold and a will of steel. The inspiration that Kara exudes will play a large role in the bright future of ASAP.
Kara would love to talk to people around her age with SM and/or Chiari. If you are interested in contacting Kara, send an e-mail to
teenconnections@aol.com. Your message will be forwarded to her. She is an absolute delight
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