Nevin Steiner
  • Male
  • Plainville, CT
  • United States
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Nevin Steiner's Friends

  • Shea Holbrook
  • Perlita & Gordy Hains
  • Tamara "Michael's Mulisha"
  • Rafael
 

Nevin Steiner's Page

Profile Information

About me:
I am a twenty-five year old with Beckers Muscular Dystrophy. I work for ESPN, providing fans with video content on the internet and cell phones. I love to bike and am a huge Yankee fan. I also enjoy the adventure of cooking.
About my family:
I am the only one in my family with Muscular Dystrophy.
Name(s) of child(ren)/individual(s) with Duchenne:
Nevin Steiner, myself
Age(s) of child(ren)/individual(s) with Duchenne:
19 or older
City:
Plainville, ct

Comment Wall (7 comments)

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At 10:07pm on December 7, 2009, Donna Skibo said…
Nevin:
My son has Beckers. He is 45 and has a pacemaker. Really it is a three lead Cardiac Resynchronization Therapy Defibrillator or CRT-D. He has cardiomyopathy. He has been working in the boat building industry until 08. He has in phase deletions of exons 45, 46, & 47. We know this from DNA testing with Dr Flanagan.
At 6:50pm on July 28, 2009, Perlita & Gordy Hains said…
Hi Nevin - just came across your page & you have inspired me. My 3 yr old son Levi has DMD. We just found out a few mths ago. Our 2 older boys are very active & highly competitive. I sometimes think to far ahead as to the things Levi may want to do that he won't be able to.... it kills me. After reading your info, my mind is changing...we will let him be a kid. Levi has a stop codon so PTC is for him. God Bless you!
At 12:06am on July 27, 2009, Tamara "Michael's Mulisha" said…
No, he is doing great. Just enjoying swimming in this heat. So, what is your DNA deletion? Are you seeing any Nueros right now?
At 12:45pm on July 14, 2009, Tamara "Michael's Mulisha" said…
I see. They have a lot of trials out there but none are for Michael. He needs a drug called Utrophin. It started to go to trial but then they pulled it out. We were really bummed. What is your DNA deletion? Michael has a deletion of 45-49. Was your mom a carrier? Do you still see doctors?
At 12:18pm on July 14, 2009, Tamara "Michael's Mulisha" said…
They told you could be cured? What did they mean by that?
At 11:57pm on July 12, 2009, Tamara "Michael's Mulisha" said…
Thank you for writing me. It was so good to hear what you had to say. I know everyone is different and will go through different things but you give us a lot of hope. We are sport crazys too. My husband played football for ASU and then a few pre-seasons with the AZ Cardinals. I played soccer for 23 years. We just knew that our kids were going to be great at sports. Then when Michael showed he ran slower and couldnt really keep up with his friends we knew something had to be wrong. He got diagnosed with MD 1 year ago this month but it has taken us until 1 week ago to find out he has Becker and not Duchenne. His dystrophin biopsy came back showing he produced 20-100%. Do you know how much you produce. Have you had a biopsy? We are a lot like your parents, we just want Michael to have fun. He knows he has "special" muscles and he just smiles and giggles when he is running. We believe in quality of life and whatever makes him happy is good for us.

How did you become a part of this website? Im glad you did!!! Do you know other men out there with Becker or Duchennes?
At 4:43pm on July 10, 2009, Tamara "Michael's Mulisha" said…
Hello, how are you? Im sure you are going to get this a lot but can I pick your brain? PLease tell me more about yourself. My son has Becker. He is 4 years old. PLease tell me everything that you are going through at age 25 and what you have been through. I know thats a lot, Im sorry to ask so much but I just would love to know what my son will be going through. Have you had a biopsy done to tell you how much dystrophin you produce? Ok, tell me what you can. Im so glad to have found you. I wish there is something I could help you with.
 
 
 

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