Victor Tavarez
  • Male
  • Charlotte, NC
  • United States
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Victor Tavarez's Friends

  • Christine Marie Pierce
  • Jessica Florkowski
  • Jacobs Mommom
 

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Profile Information

About me:
My name is Victor and I have a son who is 15 years old with Duchenne.
About my family:
I recently relocated to Charlotte NC with my son Victor and Kimberly.
Name(s) of child(ren)/individual(s) with Duchenne:
Victor A. Tavarez Jr.
Age(s) of child(ren)/individual(s) with Duchenne:
7-12, 13-18
City:
Charlotte
State:
NC

Comment Wall (6 comments)

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At 9:42am on December 14, 2013, Christine Marie Pierce said…

Victor, don't know if you are still on PPMD, but I thought I should send this out to you specifically.  If you remember, I live up near Northwestern Lehigh School District.  I hope all is well.  Here is what I have posted.  Look into this, really.  It has been amazing for my son Lance.  All of this information is true.  We have found positive results!!

Best of Luck,


Christine Pierce

My son Lance has DMD.  For the last year we have been doing an experimental therapy.  Lance is the ONLY person in the country - probably the world - to be trying this therapy.  We are having what I feel is AMAZING results and I think now might be the time to share this good news so that you too might consider the therapy for your child.

First - I want you to know that I have no affiliation with this company at all.  We only looked into this therapy because my husband had a stroke and was using this photobiomodulation to help himself with recovery.  The company, called The Hope Institute, suggested we treat Lance to see what results we could establish and we decided we would.  After all, it is only light therapy and it CAN'T HURT A PERSON IN ANY WAY WHATSOEVER.

Here is the results after 10 months of therapy:

BEFORE THERAPY                     AFTER THERAPY

Standing - 10 seconds      Standing 50 seconds            

Blood Pressure - high        slightly elevated

Walking - 3 steps with assistance    walking 46 steps with assistance

heart rate - elevated controlled with medication   doctors considering removing medication

spine x ray - 10% curvature      NO curvature

attitude -  sometimes depressed / occasional crying jags  Lance is always happy

Now the doctors want us to get a gait trainer!  Yes!!!  That's right!  THE DOCTORS want to get Lance walking even more!! Now THAT'S progress!!!  I'm SO Excited!! 

The doctors are excited about Lance's progress too.  Can you believe it?  Yes, I said progress.  One doctor even said  "progress isn't a word we use with Duchenne patients, but in your case we can say it. That's astounding."

Now, let me tell you this… I am a mom who has a kid with DMD.  I know the hope we all hold out for our boys.  I also know how desperately we all want to grab onto any therapy.  I know we all need to find our own path and advocate for our sons.  That is why I have taken Lance to this therapy for a year and I have not shared this with you.  I wanted to make sure these results were real.  I do not want to give you false hope or false results.  

Gosh, I feel like I sound like a "too good to be true" infomercial.  I get that.  I know what it sounds like…but I am here to tell you that this is factual information and it is time to open this therapy up to all families who would like to see what this light therapy can do for your child.

Now, the Hope Institute in Easton Pa. ( located in Eastern Pa. about a 15 minute drive from New Jersey) is looking to try this therapy on some new patients to see if they can duplicate the results with others.  Yes, your child could be that person!  Even if it stops the progression of the disease, that's positive results!!  I know…it doesn't seem possible but I am here to testify that all you are reading above is true and accurate.  

Do you want to give this a try?  Remember, there is NO NEGATIVE SIDE EFFECTS!  It's only light therapy.  It's kind of like laying under a tanning bed 2 or 3 times a week, except you don't get tan! 

I don't know if The Hope Institute's web site has been updated as of yet, they used to be ATA Revitalization.  You can look them up through Google and see what they do.  Yes, treating DMD and having po

At 11:14am on January 8, 2010, Christine Marie Pierce said…
Hello Victor Sr. My name is Christine Pierce and my husband and I live Just north of Allentown in New Tripoli. Our son turned 10 in September (2009). He has DMD. We also have a daughter who is 12. Lance, my son, is always looking to find boys who would like to game with him or come over and hang out. It must be so hard to be on your own, but you are not alone. Please feel free to email me and let's get our sons together! Lance still walks around but he is getting to the point where he would rather sit. It is such an effort to get around for him. Hope to hear from you. Carltine@aol.com
At 9:38pm on October 21, 2008, Jessica Florkowski said…
Victor- Hi It's Jessica from the airplane pull. We had a great time with your family. Hope we can do it next year. Did you get the pictures? How are Victor and Kimberly doing? We are doing well. Hope to see you all again soon, maybe at another function.
At 10:10pm on July 27, 2008, Victor Tavarez said…
Thanks Donna for clearing that up for me. How's Jacob doing? My son is doing just fine. he just turned 10 last month. I'm not sure which mutation or exons he may be missing. I think it will be a great idea to get the boys to meet. Did your son participate in summer camp this year? My son went and it was a great experience for him. I will try to call you this week. Here's my number 484-788-5833. I'm usually home from work after 8pm. Feel free to call me.
Victor Sr.
At 7:20pm on July 26, 2008, Jacobs Mommom said…
Hi Victor:

If you go to the "Groups" link at the top of the page and then go to page 2 you will see Pennsylvania Group there.

How is your son doing right now? Do you know what mutation he has? Jacob's is missing exons 42 and 43. He turned 8 two weeks ago.

It would be nice to get the boys together so they know of someone else with this disease.

If you want to call me my phone number is 215-345-7421 and I'm available most evenings.

Donna
At 1:48pm on July 22, 2008, Jacobs Mommom said…
Hi Victor:

I am the MomMom of an 8 year old boy, Jacob, with DMD. I live in Doylestown, PA and he lives in Lansdale, PA.

Please go in and join the Pennsylvania Group so that we can try to get everyone in our area together to meet.

Donna
 
 
 

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