Connor McCabe is a 6th grader at St. John the Baptist’s school. He has received speech therapy since 18 months and at one time was considered “completely unintelligible”. Despite making great strides with his speech, he still struggles to be understood. He also has difficulty hearing what is being said both socially and at school. He was recently identified as having a Central Auditory Processing Disorder called Auditory Decoding Deficient. This means that although he is not hearing impaired, he hears like a hearing impaired person would. It was recommended that he use a personal FM Device to help him hear exactly what his teacher is saying anywhere in the classroom, as well as to help improve his speech. The device, called an EduLink, has an amplifier worn by his teacher and a receiver that is fitted into Connor’s ear. The teacher’s voice is then put directly into his ear so that he can hear what he/she is saying without background distractions. Because this is a hearing device, insurance will not cover the cost. Also, he is not eligible for specialized services through the school district because he attends a private school. He plans to continue his high school education at St. Lawrence Seminary in Mt. Calvary.
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Pam Carpenter, age 49
Lyme disease is a multisystem illness caused by an infection from a deer tick. There are three stages to Lyme disease. It is very difficult to diagnose Lyme disease. 80% of Lyme disease patients have stage one. This past year, my mother was diagnosed with stage 3 complication Lyme disease. My mother and father have been married for 31 years: they have 3 children and 5 grandchildren. She loves to sew, quilt, walk outdoors, and spend time with her family. Unfortunately her form of Lyme disease was caught in the latest stage and therefore has left her extremely ill and for most of the day bedridden and unable to do the things she loves to do, including holding her grandchildren. Her symptoms include severe neuropathy (numbness and tingling), chronic severe joint pain nausea, vomiting, weight loss, chest pain, anemia, profuse sweating, and severe activity intolerance. There is no cure for Lyme disease. She was recently started on long term intravenous antibiotic therapy with hopes to put the disease in remission and thus lessen the severity of her symptoms to improve her quality of life. My mother would love to take a walk to a park with her grand-children and visit her son in Colorado. Now that she is receiving treatments, we are hopeful that someday she may get to do those things that mean so much to her. Unfortunately, her treatment plan is very costly and her insurance will not cover the entire needed length of her antibiotic therapy. My mother has spent her entire life helping and taking care of others and now she needs help from people like you and me. Thanks you to all in advance and hope to see you at the Gift of Life tournament.
Sincerely, Nicole Steinhardt
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My story begins in my early twenties when I was diagnosed with Ulcerative Colitis, an Inflammatory Bowel Disease of the large intestine (not related to Crohn's Disease, of the small intestine). I was ill for twenty years with frequent bloody diarrhea, weight loss, fatigue, and anemia caused by ulcers in the lining of the colon. I was maintained on sulfa drugs and steroids until 1991 when I was sent to the Marshfield Clinic by my local physician, a Gastroenterologist, where a specialized surgeon removed my entire colon and fabricated what is known as a "J-Pouch" reservoir to hold stool in place of the colon. In 1994, I had my first complications with the J-Pouch, and they got considerably worse as the years went on. I had several surgeries at Marshfield to improve my pouch; the last one being in June 2007. I emerged from a 4-1/2 hour surgery to learn that my pouch was not salvageable and that I now had a permanent ileostomy (a bag on my belly) to collect stool. I was ill for the next six months with diarrhea, dehydration, malnutrition, and malaise and fatigue. In December 2007, I was referred to St. Petersburg, Florida, where a surgeon operated on my and placed a continent ostomy inside of me. It is called a BCIR (Barnett Continent Intestinal Reservoir). My daughter, age 25, followed in my footsteps and was stricken with Ulcerative Colitis at age 14 and had her colon removed at Marshfield also with a J-Pouch fashioned. She suffered complications just like me, so before my BCIR was put in, I took her to the hospital and had her continent ostomy
(BCIR) put in. She never suffered any complications and is perfect. Hence, I had high hopes my December surgery would render me just like her. Alas, upon return home in January 2008, after 21 days in Florida, I grew abscesses in my abdomen accompanied by high fevers. I was hospitalized at St. Nicholas Hospital 4 times since the December surgery. Finally, on May 16, I was flown back to St. Petersburg, Florida, and the surgeon operated on me and "fixed"
my new continent ostomy and removed the abdominal abscesses. Upon return on June 5, I had high hopes for a total recovery. Since then, I have had two relapses which have necessitated putting in a tube into my belly and hooking it up to a drainage bag and leaving it in for weeks at a time in the hopes that my ostomy valve would heal and close and no longer leak when the tube was removed. I am now on my second stint of the indwelling catheter and drainage bag and my valve continues to leak stool, which is not normal.
My mental health has suffered greatly; I have lost interest in my life as I once knew it. I am struggling to get well and only hope that time and all the love and prayers from friends, family, and people like Vickie will pull me through.
Thank you so much, Regards . . . . robellie |
