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February
28

Rare Disease Day 2015 - Press Release EN

Posted on Saturday 28th February, 2015

UK

...  Read further about Rare Disease Day 2015 - Press Release EN



October
12

The DysNet Digest: Inspiring stories, Interesting news

Posted on Friday 12th October, 2012

DysNet Digest

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October
1

The EDRIC meeting in Sweden: a quantum leap forward

Posted on Monday 1st October, 2012

After last weekend's Members' meeting in Malmö, the chairman of EDRIC, Geoff Adams-Spink offers his reflections on its success and the way forward for the members and for DysNet

...  Read further about The EDRIC meeting in Sweden: a quantum leap forward


September
10

Poland Syndrome Documentary and Me, by Woody Bavota

Posted on Monday 10th September, 2012


A really interesting documentary project investigating Poland Syndrome is being made by a man who only discovered his real diagnosis at the age of 51. 

Film-maker, Woody Bavota had forged a successful career in the movie and music industries, but had never known the name of his differences until a chance meeting with a man at an airport who had the same syndrome. 

Now he's concentrating on spreading awareness and knowledge about PS, which is characterised by a missing pectoral muscle and often, missing fingers, through his forthcoming documentary which will se him travel the world in search of answers. 

In this exclusive article for DysNet, Woody Bavota writes about his fascinating life with Poland Syndrome and exciting plans for the documentary. 

*******

My name is Woody Bavota, I was born in 1955, an only child to two loving and generous parents.  Mom worked for the Phone Company and dad worked at the Ford plant.  From day one I was sheltered, hovered over and told that I was special.  One day I realized that I was different, was missing a hand, a pectoral muscle and I wondered why.  Mom and dad told me that God made me that way and reiterated what I had heard every day of my life, that I was special. 

Woody BavotaI believed them and still do! We are all special, unique in our own way and making the world go round in our special way.  At seven I had my first operation on my hand, which was basically my wrist.  They made a V in the middle, and then a second operation to deepen the V and at ten they transplanted tendons from my foot to enable me to pinch.  The doctors had greater thoughts in 1965 to add a prosthesis and utilize my new pinching power to manipulate the artificial hand.  I wanted nothing to do with it and told them that it would be like putting a fake hand on top of theirs and expecting them to use it or feel comfortable with it. 

But what did happen was miraculous.  My doctor, a Dr.  Logue knew of my love of baseball and my frustration.  Utilizing a right handed glove I would catch the ball, then remove the glove, pinch it under my left arm and throw the ball.  Well the kid hitting the ball was already at home plate, I was always the last kid picked to play.  Dr.  Logue and my Dad, Woody Sr.  took it upon themselves to contact the Wilson Sporting Goods Company and they spoke with the guy in charge, Lefty Nelson.  Mr.  Nelson immediately embraced the idea and sent a representative to meet me at the hospital.  They took a plaster cast and the gentleman asked me all about playing baseball.  Well, nine months of research and development in Wilson's Chicago plant produced a glove, my baseball glove.  The only one in existence, indeed I was special. 

With the power of this glove I went on to play both minor league and little league baseball.  But the most important thing was that I became one of the guys, no longer felt like the outcast and became empowered to do, become, grow into whatever my dreams were and I did.  Nothing in the world ever felt like an obstacle, I just did and became whatever I wanted without hesitation. 

At fifteen I went to a Crosby, Stills, Nash and Young concert, my world was changed, I was enlightened literally.  The stage lighting was a visual, an emotion that I had never seen or felt prior.  Wow, I thought I can do that, I want to do that, I think I'll become that.  Later that same night I went home and told my parents that I wanted to be a lighting guy.  I remember my excitement and never gave up on it.  Searching for lighting books I couldn't find any rock and roll books, just theater books by the likes of Jean Rosenthal, the great theatre lighting designer.  So I consumed all that I could find.  The very next year at sixteen I asked my parents to loan me two thousand dollars to purchase a light show. 

Now you have to remember this was 1971, I was a presumably disabled kid and my parents were two working class people.  But they had seen my commitment and most likely felt that it was good that their little boy had a direction.  As I found out later in life that their main concern was what I would qualify to do, be in life.  So I found a little entertainment lighting company by chance as I was driving by one day in a town near mine.  Owed by a great guy, who was a local cop as well and he set me up with theatrical lighting gear.  My dilemma was that after purchasing the lights, the left over money wasn't enough for a control board.  Without a thought I got together with a friend and built one, with household dimmers and toggle switches and I was ready to rock and roll. 

My first gig, as they say, was at a club called the Beach Ball in Revere.  I was underage but it really didn't matter to them, because they paid me twenty-five dollars a weekend.  My first show came and I couldn't have been more excited, I was flashing the lights, hitting the strobe lights, the florescent black lights and the fog machine.  Directly after the first set I saw the guitarist coming over to me, in my mind to tell me what a great job that I did and he said quote, you have no idea what you are doing do you.  And my response was, I thought that I did, I guess not but I'm having fun.  Well he turned out to be a good person and he taught me a bit about lighting a rock and roll band. 

...  Read further about Poland Syndrome Documentary and Me, by Woody Bavota


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