Luis Merino
  • Male
  • Pomona, CA
  • United States
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  • Jennifer Edge
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Luis Merino's Discussions

Athena test came back negative, biopsy confirmed DMD

Started this discussion. Last reply by Paul Cliff Apr 20, 2011. 9 Replies

Hi Everyone Our doctors were less than helpful in explaining to us why this happened. I'm hoping someone can tell me or at least point me in the right direction for me to understand why these test…Continue

 

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Paul Cliff replied to Luis Merino's discussion Athena test came back negative, biopsy confirmed DMD
"Susan's right.  The genetic counselors at Duchenne Connect are fairly helpful, and are willing to take your calls multiple times which is helpful if, like me, you understand part of what they tell you, think about the rest and then have…"
Apr 20, 2011
Susan Rathfelder replied to Luis Merino's discussion Athena test came back negative, biopsy confirmed DMD
"If you haven't done so yet register your son on the Duchenne Connect patient registry site. They have genetic counselors that can help you figure out what tests to try, they will work with your drs. too."
Apr 16, 2011
Bernardo A. Iriberri replied to Luis Merino's discussion Athena test came back negative, biopsy confirmed DMD
"Hi Luis,   My son's DNA was tested first through the more conventional ways (PCR) and no duplication or deletion was found, Then we started reading about the so called "DOVAM" tests (Detection of Virtually All Mutations). We live…"
Apr 15, 2011
Susan Rathfelder replied to Luis Merino's discussion Athena test came back negative, biopsy confirmed DMD
"Jonathan did have a muscle biopsy which showed no dystrophin in the sample tested. At this point Jon's Drs feel he is more of a Beckers, but who knows. From what I understand there may be as many as 5% of boys that they may never be able to…"
Apr 14, 2011
Jennifer Edge replied to Luis Merino's discussion Athena test came back negative, biopsy confirmed DMD
". Hi Luis,  I'm so sorry to hear about your son and I feel your frustration. I'm where you are now with our son Anthony but I'm starting to get answers finally. Our son who is 5 was just diagnosed 3 months ago. He…"
Apr 14, 2011
Luis Merino replied to Luis Merino's discussion Athena test came back negative, biopsy confirmed DMD
"Susan - I'm sorry to hear that about Jonanthan. I hope things will get better.   Andrea - From what I understand there are two test. One detects 70% and the other 30%. My son is in the 10% that is unknown. At least for…"
Apr 14, 2011
Susan Rathfelder replied to Luis Merino's discussion Athena test came back negative, biopsy confirmed DMD
"Luis, It means that they weren't able to identify your son's particular mutation/deletion/duplication that is resulting in your sons DMD diagnosis. Our son Jonathan is 20 and has had 4 different DNA tests and they still haven't been…"
Apr 14, 2011
Luis Merino posted a discussion

Athena test came back negative, biopsy confirmed DMD

Hi Everyone Our doctors were less than helpful in explaining to us why this happened. I'm hoping someone can tell me or at least point me in the right direction for me to understand why these test came back negative. What does this say about the type of dmd my son has? Its just an unknown type? He took the full athena test that looks for mutations, deletetion, duplications, etc. Thank youLuis  See More
Apr 14, 2011
Luis Merino is now a member of PPMD Community
Apr 27, 2010

Profile Information

About my family:
I'm the proud father of Luisito, he was diagnosed in October 2010. We visit the Duchenne Clinic at UCLA and are hopeful for the future. I also have two other children without DMD and a loving wife, who I see as my best friend.

Luis is everything I always I wanted in a son, DMD will never take that away from me...
Name(s) of child(ren)/individual(s) with Duchenne:
Luis
Age(s) of child(ren)/individual(s) with Duchenne:
4-6
City:
Pomona Ca

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At 12:36pm on June 3, 2010, irishgirl said…
Thanks! I appreciate the comment!
 
 
 

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