Preethi
  • Female
  • Tulsa, OK
  • United States
Share on Facebook
Share

Preethi's Friends

  • Nguyen Van Anh
  • Trisha Stringham
  • Vickie Lee Beard
  • Ryan Fischer
 

Preethi's Page

Profile Information

About me:
I am a stay at home mom. I used to work as a teacher. Kids have always been my first and foremost priority. Some might think I am crazy cause i do not compromise when it comes to my kids.. DMD this is something I cannot learnt to accept.. there are normal days and then there are days I feel numb and cry..
About my family:
I have 2 beautiful boys 10 and 4. My younger son has been diagnosed with DMD. He has a rare deletion exon 36. It is a random deletion. I yet to find someone with similar deletion.. to have any idea about the prognosis..
Age(s) of child(ren)/individual(s) with Duchenne:
4-6
City:
Tulsa
State:
Ok

Comment Wall (4 comments)

You need to be a member of PPMD Community to add comments!

Join PPMD Community

At 7:04am on November 13, 2013, Rahul Singh said…
Hi Preethi,
I am Rahul from India and my 3 year old son has been diagnosed with DMD recently. Though have gathered a lot of information from net/ sites, etc. still we have some questions lingering. Hope we can connect.
Thanks.
Rahul
At 2:15pm on September 5, 2013, Vickie Lee Beard said…
Hi preethi,
Glad if we are any help at all...I believe that if you have to ha e a child with DMD now is the time... With Pat Furlongs determination , drive and her ability to unite us all in a common cause, I think DMD will be cured in the near future.... Believe
At 11:08pm on September 3, 2013, Preethi said…
Thank you so much. We knew about the treatment but were discouraged as our neurologist did not recommend it.. But my husband and I were very curious.

Could you please give an insight about this ? Thx
At 10:13pm on September 3, 2013, Billy Clowers said…

My wife and I have 2 sons with DMD.  Our oldest is starting a clinical trial in Houston Texas for Vecttor therapy.  It is not a drug but a low level electrical stimulant of the nerves (not the muscles) that can drastically increase circulation.  The results have been very encouraging.  The device is used in your home daily. 

You can find the information at clinicaltrials.gov 

I am reaching out to fellow families and friends that are dealing with DMD in hopes to recruit 6 more boys that are non-ambulatory and under the age of 20.  If you would like to become part of the trial please contact Dr. Donald Rhodes.

contact VECTTORtrial@gmail.com or call the study coordinator at (713) 734-4433 for more information.

I can forward you an very informative email that I recently received from Dr. Rhodes. To get this forward to you, send me and email to

defeatingduchennes@gmail.com

There are only 3 sets of 4 DMD boys and my most recent information is that 2 openings are remaining for the 2nd set, BUT TO GET THOSE SPOTS YOU MUST ACT FAST AS THE DEADLINE IS SEPTEMBER 9TH, 2013.

The last wave still has 4 spots in case you do miss the 9/9/13 Deadline.

This small study will facilitate FDA approval.  Once FDA approved, usage will become mainstream and insurance companies will "cover" the treatment.

The device is already FDA approved for pain therapy and is currently available in the USA with a prescription and in the European Union without a prescription.

Please thoughtfully consider joining us in the study and bringing this device, that has given me hope for the first time, to more families.

Peace,

Billy Clowers

Jn15:5 & Phil4:13

P.S.  I am sending this out first to people close to Houston.  The study is free of charge, however, you must provide your own transportation.

P.S.S. We live in Houston and even if you decide not to partake in the study, please contact us if you ever want to talk to another parent for any reason.  My personal cell number is 281 919 5443.  I teach school so will most likely not answer between 7 - 2:30 Texas Time.

 
 
 

Need help using this community site? Visit Ning's Help Page.

Members

Events

© 2019   Created by PPMD.   Powered by

Badges  |  Report an Issue  |  Privacy Policy  |  Terms of Service