|
Hi all! It’s me, Aunt Valerie, returning to you after a couple years with some fantastic news about my now four year old nephew, Manny Wilke! I have included an extensive update for both your information and your consideration. I invite you to read below and also visit Manny’s special website created by Uncle Derek www.mannywilke.com. I will share Manny’s medical history and the exciting 18 month “journey to hear” he will embark on beginning this March! I so appreciate your continued support of my sister and her family as they enter this next phase of Manny’s adventure. Manny’s Medical History Shortly after Manny was born, he was transferred to the American Family UW Children’s Hospital in Madison, where Manny was diagnosed with another major birth defect called Tracheoesophageal Fistula or TE Fistula. He had a "fistula" (connection) between his trachea and esophagus which required surgery at 5 days old. In addition to these two birth defects, he was born with 5 additional ones and continues to get monitored regularly by a Cardiologist, Opthamologist, and Geneticist. During his first three years of life Manny got to play with a Speech Therapist, Physical Therapist and Hearing Therapist weekly. In fact, during Manny’s first year of life he had 104 doctor and therapy appointments. Despite being labeled deaf, Manny was fitted for a bone conduction hearing aid when he was 6 weeks old, allowing him to hear and develop speech. Many of you remember that his mommy, Tiffany, became a primary advocate for hearing impaired children in Wisconsin and volunteered hours and hours of her time to help pass the hearing aid/cochlear implant bill a couple years ago. Manny also is proudly an American Family UW Children’s Hospital “Champion” and helps raise money every year for the Children’s Hospital through telethons, web campaigns, and, of course, our family’s favorite charity, the Greater Bucky Open www.greaterbuckyopen.com. In March 2010 Manny received a CT Scan which revealed excellent news! He could have surgery to open up his ear canals allowing him to be able hear more effectively through air versus bone. We all know how special Manny is…but let me explain just how special. Manny’s two ear related birth defects, Microtia and Atresia only occur in approximately 1 in 15,000 births. Out of this 1 in 15,000, only 3% are bilateral and only 3% of these children have no outer ear, also known as “anotia.” Manny is all of the above. Combined with his other birth defects, the doctors say Manny is one in a million, literally. The severity of his birth defects, along with the complexity of the others, makes his surgical situation more challenging. The family is very excited the opportunity exists to have surgery to open up each ear canal (atresia repair) and reconstruct two outer ears with doctors who specialize in Manny’s incredibly rare birth defects. Unfortunately, these specialists reside in California in two different cities. Manny will undergo atresia repair at the California Ear Institute in Palo Alto, California, and reconstruction at Cedars Sinai Hospital in Los Angeles. If the family could raise $100,000 the specialists could perform 2 combined surgeries in the same city. However, the family is realistically hoping to raise $30,000 and have separate surgeries in two different cities where the specialists reside over an 18 month period. For this option the entire surgical process will take 5-7 surgeries, one surgery every four months, with each surgery requiring a 1-3 week stay in California. (**UPDATE: BECAUSE OF SUCH OVERWHELMING SUPPORT AND GENEROSITY MANNY IS TRYING TO RAISE $100K FOR COMBINED SURGERIES - SAVING HIM MULTIPLE SURGERIES!) Manny’s Surgery Estimated Timeline Manny’s Fundraisers With love and gratitude, 1/13/2011 am620 TMJ4 |
 |
|