Aunt Valerie Letter

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  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
Manny was born on October 7, 2006, in Beaver Dam. To his parent’s complete surprise, Manny was born with a variety of birth defects. Most immediately noticeable were birth defects called Bilateral Microtia (no ears) and Bilateral Atresia (no open ear canals). Because his ear canals are completely closed he was pronounced legally deaf at birth. 

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

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
-March 2010: Palo Alto, 1 week, open right ear canal (the better canal) atresia repair Dr Joseph Roberson, California Ear Institute
-August 2011: Los Angeles, 3 weeks, reconstruct right ear (the worse outside ear), medpor Dr Sheryl Lewin, Cedars Sinai Los Angeles
-December 2011: Palo Alto, 1 week, open left ear canal (the worse canal) atresia repair
-March 2012: Palo Alto, 1 week, put cadaver bone in left ear if need 2 surgeries for ideal hearing
-August 2012: Los Angeles, 3 weeks: reconstruct left ear (medpor) touch ups on right ear
-December 2012: Los Angeles, 2 weeks: touch ups on left ear

Manny’s Fundraisers
Although support can be offered in many valuable ways, I wanted to highlight a couple specific ones for your consideration.  The most immediate needs are surgery related expenses not covered by insurance and travel expenses.  Manny’s fancy website allows you to donate money online and offers suggestions to donate airline miles.  On Saturday, February 19th at the Beaver Dam Country Club,  Erin Broome, R.J. Shelton, and Joe and Jane Loizzo are graciously hosting a benefit.  Please come join the fun from 8pm-midnight!  A silent auction will be held from 8-10pm.  Two additional future fundraisers are also being planned. One will be a pie fundraiser at the Wilke’s church, Good Shepherd Lutheran Church in Beaver Dam.  Thrivent Financial has a wonderful program which will match any donations up to $5000 made at that fundraiser (and combined with the other BD benefit).  Another event is planned at the Brink Lounge in Madison for late spring/early summer.  I’ll keep you posted on these future fundraising dates.  I hope you will consider being a part of Manny’s exciting journey to hear!  

With love and gratitude,
Aunt Valerie

1/13/2011 am620 TMJ4
Tiffany interviewed about Manny