I don't know if any of you have heard of this but I thought I would pass on... CureDuchenne (website: cureduchenne.org) is having an annual 2010 Climb to Cure Duchenne, Pick your Peak on June 19th and 20th.

I know that many of you will not be able to participate due to various reasons. And I know many of you may be particularily fond of just supporting PPMD, however our money all goes to the same place, right? To cure…

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So I don't know where to post this, so I am hoping if I post it here many people will see it...

Okay so our son Trey has a deletion of Exon 52 which we found out about while I was pregnant with our daughter. After having our daughter I was genetically tested and found to not be a carrier, but the genetisist did say that there is a small possibilty of Genetic Mosaicism.

Now 4 months after having our Daughter I get a call from my OB doctor stating that she is…

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So our little Trey has been diagnosed with a single deletion of exon 52. With that and all the research I have done I understand that he needs to skip exon 51 or 53 to become 'inframe'...and I also understand that research is currently being done for boys with this deletion.



A huge question I do have is I was told that if a child is missing exon 52 or any higher then that then they are missing isomers in their brain of DP140 and DP260. Little Treyman is very bright but it does seem… Continue

Okay I am writing to rant...I am SO very fustrated...



Went to the school district today to get Trey enrolled in Early Start Kindergarten...we are in the process of the IEP now, and this lady asked how old Trey was...Trey just turned 5 last wednesday, and we just got a 90% sure diagnosis of Duchenne's last Wednesday...so this is all new.



She asked me when his birthday was (September) then went off on me about the fact that Trey was 5 already (for 6 whole days) and not in… Continue

We get our findings on our CBC as well as Thyroid, ESR, etc. tomorrow regarding our loveable little Trey... Was attempting to do some research to find out if any other levels are found to be raised in children suffering from this horrible disorder...



I know that we will be doing the muscle biopsy, and I am scheduled for genetic testing as he will be in the near future...just curious if any of you remember if any other levels in the CBC that were raised along with the CPK… Continue

Wow what a interesting and mildly devastating past 2 weeks...Our gorgeous, rambunctous, sweet Trey man has our heart breaking... 2 weeks ago Trey decided to be Superman...he realized he can't fly and dislocated his elbow, after a trip to the ER and sedation to put his elbow back in 'spot', he was casted and sent home...



At our doctors appt. on Monday, to our surprise we had a new doctor. She is great...This happening often when you live a life such as ours ~ I'm a physical therapist… Continue