Tuesday, November 10, 2015

Bob The Bubble Boy and Rae the Cushings Girl

Cushie Rae and Bob the Bubble Boy
The Amazing Venice Freak Show introduces Bob The Bubble Boy! Come one, Come all...Check out Larry the Wolfman, the two headed snake, Morgue the Shock Artist, the Beautiful Bearded Lady and more......


Famous Venice Freak Show on AMC and Netflix
This is some of what we heard from the Venice Beach Walkway. It was my daughters 17th Birthday and she wanted to go in. 5 Dollars each and you got to see a show, meet some people and also see a Museum of interesting Oddities.
Beautiful Bearded Lady. She has Adrenal problems that create too much Testosterone

We sat down kind of uncomfortable. Not because of the seats but because not sure what we would end up seeing. The show started with Bob the Bubble Boy. He showed how his skin had "bubbles" all over his body. He told us how he started getting them at puberty and how it wasnt easy on him. I felt so much for him it was unreal. Having my Rare Disease Cushings I know in a small form how it is to be stared at or looked at differently. Next they had the shock artist Morgue and his lovely lady do some incredible things like swallowing swords, putting a hook up his nose into his mouth, sitting in an electric chair and eating fire. All things that are not tricks but they are doing for real. I was amazed and also horrified as I had to look away a couple times thinking they were going to hurt themselves. They didnt. Applause was loud!
Eating Fire

Morgue swallowing sword

Amazing Painful things Morgue can do

After the show you are able to take pictures with anyone and see the Museum. Honestly all I wanted to do was talk to Bob The Bubble Boy. I wanted to get to know HIM. He had talked during the show how people were afraid he was contagious and how they wouldnt touch what he touched. I was so saddened by how people treated him but amazed by what a positive guy he was. I had to talk to him.
My Daughter Cassie and Bob! Give him a hug from us


What I thought would be a couple minutes slowly turned into an hour where he had to excuse himself and go on stage then come back and talk to my husband, daughter and I.

Bob is Bob Heslip. He is a 50 year old man who has a very lovely wife who works their counters at the Venice Freak Show. Bob has 3 children of which one is still at home as she is 15. He is also a grandfather to two beautiful Grandchildren. Bob has NF.
Most Amazing Man who isn't afraid to show you more about Neurofibromatosis. Its not contagious! Educate yourselves
What is NF? Its Neurofibromatosis. Its a condition that ecnopasses a set of distinct genetic disorders that cause tumors to grow along various types of nerves. It causes tumors to grow on or in the body. It is hereditary and half of all people who have this have gotten it from their parents. It can be VERY painful as it is at nerve endings. IT IS NOT CONTAGIOUS! This is the same condition that the Elephant Man had. Bob thankfully is blessed to not have the pain part of NF. If you would like to learn more about NF please visit www.ninds.nih.gov


Bob is an amazing person with an amazing attitude of life. He has gone through a lot of things in his life. So much he said that he should write a book about it one day. I was saddened when he told me some of those stories as no one should be treated the way he was in some of the situations. Like being at work and a lady saying she wouldnt touch something that he had touched. Or people who are afraid to shake his hand or give Bob a hug. Bob just has this glow about him. He talked to my daughter about bullying and how she should just be happy every morning that she is alive and well. Our family loves Bob Heslip. I wanted to know about the real guy behind Bob the Bubble Boy.

We did talk a lot about the Freak Show aspect of things. Todd Ray runs the Venice Freak Show. It has been on AMC and also is now on Netflix too. We went home and watched many episodes of it and loved seeing the same people but in a different light. In Todds Ray words from the first episode he redefines the work FREAK by CELEBRATING the differences. He said it doesnt mean monster or ugly. Its Celebrating the differences that you have. Bob told us he feels comfortable with his new second family there at the Freak Show. He told us about how many of the people there have a medical condition. They fit here and are working for a living all while unbenost to you they are teaching you how others can be different in what people percieve as "normal". Each person was so kind to us. Amazing people who want you to understand them. They really can open up a lot of peoples eyes to differrent things as they see hundreds of people a day. I wish there was a way for me to tell hundreds of people about Cushings Disease everyday.
Two headed lamb

Bob really changed a lot of our thinking. At first I was almost worried about going into the Venice Freak Show. Not because of what I would see but because I didnt think it was necessarily right to be looking at someone in a certain way. However.....please do go! It will be a learning experience for you. Its fun and it helps let us all celebrate the differences in our lives. Lets us all learn that everyone has their things that they contend with whether its something that you can see or something you cant see.

Two headed live snake
Bob and I talked a lot about Cushings. The Rare Disease that I have that makes you gain weight, lose muscle, not sleep, mood swings, bruise, lose hair, gain facial hair and gives you the image of a buffalo hump. We talked about how its hard with this disease as people stare at you because they just think you eat too much. I told him how I gained 120 pounds in 2 years and how I had a buffalo hump. I am now 5 weeks in remission and things are turning around for me. We had a little bit of being able to talk about how we are different. I think that is why I wanted to talk to Bob so bad. He was this really intellegent gracious man. He talked so loveling about his wife and kids. He talked to my husband about how he could see the pain in his eyes for watching me struggle to walk and happiness to see me recovering. Ryan talked to his wife about how wonderful it is to be married to people like us. My daughter was so changed by Bob. She wants to be his daughters friend as she is 15 and my daughter is 17.
Cassie before Freak Show

Bob the Bubble Boy changed our way of thinking and lives in the couple minutes he was on stage. Please go to the Venice Freak Show. The whole crew there wants you to see them and to meet them. Let it change your life also and celebrate the differences that people have. Be shocked by the stunts they do in there and check out the museum. Its pretty neat and its only 5 dollars to get in. Make sure you shake Bobs hand and give him a hug from us.
Ryan with Morgue and Electric Girl

In the end of this all I just wanted to say something that is very close to my heart. Dont judge others! You know we all do it. I do, you do, we all do. We dont know what someone is going through in their life. We dont know what they may have been having to deal with since birth or what they might be dealing with just today. Each person is unique and should be celebrated. I know I get stares when I am eating even if its just a salad because I am bigger. I get stared at when I walk with a limp because of my muscle wasting the last couple years with Cushings Disease. Bob gets stared at for the tumors that have grown all over his skin. He gets treated unfairly because people arent knowledgable of the disease. Some wont even shake his hand or touch something he has touched. Doesnt make a person feel good. However these diseases have made us stronger too. It has made our outlooks on life better too. I agree wholeheartedly with Bob. When you wake up in the morning you should be thankful. That is a good day! Thank you Bob the Bubble Boy for letting me write about you and for forever changing our lives.
Hollywood actor and Mexican acrobat Larry Gomez was born with congenital terminal hypertrichosis, a rare condition that produces excessive hair growth

To help Bob please check out his video. This video shows him in all his glory and talks so much more indepth on NF and what he has gone through. Please SHARE it and also THUMBS up his video as it helps him make a little bit of money to go towards his medical bills. Also come visit the Venice Freak Show on Venice Beach to support the guy and gals that are there! They would appreciate it!

Bob the Bubble Boy video... Click here... https://youtu.be/VEVgp4wmxOs

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