This years chairty event fell in our lap once again. Cooper Knight is an amazing little boy. Most of you probably know him, or his mother, Sarah Knight (Imle), but Cooper is currently listed as a status 1 for a small bowel and colon transplant. This could be Cooper's best shot at a more normal life. He could get rid of the central line and TPN and he can be HOME more. He is such a strong and brave little boy! His story can be read in detail at http://cotaforcooperk.com/
With the cost of a transplant often exceeding $500,000, many transplant patients are unable to shoulder the financial burden of such a procedure. The Children’s Organ Transplant Association (COTA) is a national charity dedicated to organizing and guiding communities in raising funds for transplant-needy patients. In Spring, volunteers are raising funds for transplant patients like local child Cooper Knight.
Cooper was born at 31 weeks on November 22, 2006. He has struggled with feeding problems since birth. He was diagnosed with FTT at 6 weeks old and was treated for severe reflux. Eventually at 9 months of age and after months of turning blue during choking spells, Cooper had a fundoplication. We all thought he would get better after that, but he never really started eating. Even on high calorie formulas, his weight gain was minimal. In May 2008, Cooper had a g tube placed to begin helping him to get adequate nutrition. The day after his surgery, he contracted C Diff and became extremely ill. He had several subsequent surgeries to replace his tube and spent most of the summer in the hospital with problems tolerating his feedings. In August of 2008, Cooper was diagnosed with Chronic Intestinal Pseudo-Obstruction after undergoing a series of manometric studies. Cooper has no nerve function in his stomach, entire small bowel, and part of his colon. His nerves don't tell his muscles what to do, so they don't do much of anything. Because of this condition, Cooper cannot take any nutrition through his gut and instead is fed TPN and Lipids (engineered IV nutrition) as well as extra IV fluids to maintain his hydration through a central line. We have also found out that Cooper's brain didn't develop normally and he is missing some areas. In addition to all of that, Cooper has trouble with intermittent Hypoglycemia, hypertension, profuse sweating at the wrong times (he sweats when he is cold, not hot), temperature instability, an extremely high tolerance for pain, and a lack of tears when crying. All of those symptoms have led the neurology team to diagnose Cooper with Dysautonomia. We are still not sure if it is the primary diagnosis that has caused all of his problems or if it is secondary to some other disease. Our genetics team is working miracles and have discovered several abnormalities in Cooper's genes that could be the answer to his continuing health problems. Cooper had a muscle and nerve biopsy done in January of 2009 under the direction of the genetics team and we discovered that Cooper has severe axonal neuropathy, meaning he is pretty much missing his axonal nerves (that is my non-doctor way of describing this). Our GI team and genetics team had a meeting and the going theory is that this nerve problem holds the key to Cooper's problems...all of them. With that knowledge in hand, we took Cooper to Pittsburg to be evaluated for a small bowel transplant. He is currently listed as a status 1 for a small bowel and colon transplant. This could be Cooper's best shot at a more normal life. We could get rid of the central line and TPN and he can be HOME more. We are confident that our doctors will continue to work hard to get Cooper in the best health that we can get him. He is such a strong and brave little boy!
FIND OUT MORE ABOUT COOPER AT HIS OFFICIAL WEBSITE - HERE
Dear ALL participants in the 2009 Konicki Santa Bowl,
Throughout the years that Mike Konicki coached students in The Klein School District, he did more than turn out winning football teams. He taught life lessons and instilled character and wisdom into the hearts of all the young men whose lives he touched. His illness and death were devastating to his family, friends and The Klein community. However, through your love for this remarkable man and the game, each of you has turned your loss into a marvelous celebration of his life! How proud he is of each and every one of you for bringing help and hope to others who are in need!
If some one had told me that I would be spending December 26, 2009 at Klein Memorial Stadium, I would have thought they were crazy. I had no idea that all of you gathered once a year to play football and to catch up with old friends. When Justin contacted my daughter Sarah and expressed a desire to honor Cooper at this year’s Konicki Santa Bowl, we were stunned and very grateful.
As I began working with The Children’s Organ Transplant Association at the end of August, I was excited, but also very nervous, about the daunting figure of $100,000 that was set as our COTA “GOT GUTS” campaign goal. I knew from day one that I could not succeed without the love and support from our community, and it is people like each of you, who are bringing us ever closer to our year one goal.
Spending the day at Klein Memorial Stadium with all of you was great fun and seeing so many of you, who I knew as teenagers, was delightful! I loved watching Sarah spending time with friends she had not seen in years and hearing her laugh as you shared memories. Cooper had only recently come home from the hospital, and so it was impossible for him to spend the entire day in the cold with all of you, but he thoroughly enjoyed the two hours he was there. Cooper has no idea that he is the center of attention and that so many friends are walking with him on his Transplant Journey.
The privilege of meeting Mike Konicki’s wife and two wonderful sons, his lovely parents and sister was a real highlight of the day, and we are grateful to them for so generously wanting all of you to honor a new family in 2009. Mike’s legacy lives on through his family and especially through his sons….not just the two fine boys he helped bring into the world….but each of you who are also his sons. You pay him great honor through what you are doing in his name.
When you meet at Klein Memorial Stadium in December 2010, I would like to be there to help you in your continuing good works. The money you raised through registrations, donations, T-shirt and food sales and the auction helped put us well over the $70,000 point and we cannot thank you enough for honoring Cooper in this way! When the call comes from Pittsburgh’s Starzel Transplant Center alerting us that Cooper’s lifesaving organs have been found, know that you have helped Cooper receive his Gift Of The Miracle Of A Second Chance At Life.
Our entire family is eternally grateful to you!
Susan Imle Bollfrass,
Susan & Buddy Bollfrass, COOPER, Sarah, Kevin, Caroline, Adam & Oliver Knight