Thursday, July 31, 2008

The Mentor Program: Treacher Collins Syndrome

Cari Amici,

Today, the 31st of July, is my birthday. I turn 44 officially at 6:09 p.m. (‘ gotta get that power of three from somewhere!) Mathematically speaking, I should have twice as much fun as when I was 22 and four times the fun of my “terrible twos.” Right? I am looking forward to this . . .

But for now, I want to introduce you to “my kid” Rudy. OK, so he is not technically mine and he is no longer a child. I met Rudy Sanchez Jr. on 13 February 1992 through the City of Austin’s Mentor Program. I was working in image preservation back then and 11-year-old Rudy, along with 13 other children considered “At Risk,” waited in his elementary school library to meet their new mentors. As my co-workers and I walked into the room, Rudy enthusiastically shouted, “Who’s my friend?”

In all honesty and shame, being the queasy type, for that first moment, I had hoped it was not I. However, we still reminisce fondly about that day and celebrate this anniversary each year. Rudy rarely ceases to teach me things.

Rudy was born with Treacher Collins’ Syndrome. It is a facial-cranial birth defect that left his head severely deformed. Rudy has been in surgery more times than anyone I have ever heard of. His first one happened shortly after his birth to repair a cleft palate.


Rudy has a few other struggles, but he has always taken one day at a time. He is more optimistic than most and a smile is never far from his lips. He has learned how to play the drums and the guitar and teaches children at his church these skills. He often helps his parents in their print business and finds other jobs where he can.

Unfortunately, Rudy has been without teeth for about three years now. The doctors pulled out his last remaining teeth he had so that they would have a blank canvas with which to work after they did more surgery to extend his lower jaw. His mother tells me that Medicare will not pay for teeth because they are considered cosmetic. She was told she had to raise $13,000 to buy her son some teeth.

So, Gail Ferris at Modern Renaissance and I are pooling our resources and starting a fund raiser to help Rudy. I am in the process of choosing some of my images from Italy and we will create an edition of canvas giclée prints.

I have been working a lot on a private bronze commission and so I have not had time yet to fully prepare my images and the Web page for this canvas print project for Rudy, but I will be posting more information over the week or so. In the meantime, please visit what I do have online at:

Teeth For Rudy

So, as you add to your personal art collection or give the gift of art to others, know that you will be helping a young man to enjoy the simple pleasures of eating a healthy meal.

Wikipedia’s page on Treacher Collins Syndrome

http://www.craniofacialcenter.com/book/treacher/treach1.htm

http://www.tcconnection.org

The Craniofacial Center in Dallas, Texas USA

3 comments:

Judy said...

Hello,

Just wanted to applaud you for trying to get help for Rudy. Teeth issues are very common among individuals with TCS because of the small mouth. Does Rudy live in the US? If so, Rudy should be able to fight the teeth issue as reconstructive and congenital -- not cosmetic. I could do some research on it if you like. Would someone email me with some contact information? Good luck, and thank you for helping Rudy!

Oh, and please add:
www.tcconnection.org to your list of resources for TCS. Additionally, I believe the 'Treachercollinsfnd' that you listed no longer exists.

Sincerely,
------
Judy Mosher
Treacher Collins Connection
CoDirector / CoFounder
Judy@tcconnection.org
www.tcconnection.org
www.treachercollins.org/guests/olivia
704.545.1921 voice
704.545.1501 fax
704.201.9720 mobile
--
16 Maynard Street
Medford, MA 02155

Kelly Borsheim said...

Hello Dear Judy!
I cannot believe how quickly you found my blog entry!! I just sent you an e-mail contacting Rudy's mom Lori's contact information. I hope that the two of you can do some more good together.

Thank you for the link information. I did update the blog and change out the bad link.

And thank you for your generous support.
Cordially,
Kelly Borsheim

birdchaser said...

Just finding this post today and wondering how it all worked out with the teeth?

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