"I feel so uncertain and halting.. Living out a normal Monday.. trying to imagine what is unfolding for you today.. But I know how very strong you are.. With everything I am I am trying to send you comfort and love."
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Moria McMillen
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Moria McMillen's Groups
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Latest Activity
Moria McMillen replied to Jennipher Poffenberger's discussion Confused"Hi Jennifer,
Getting the diagnosis is so hard. When our son was diagnosed, I felt like the air had been sucked off of the entire planet. I faught just to breath for a week. Some of the things that we have done for our son is to focas on the…"
Moria McMillen replied to Sif Hauksdóttir's discussion Deletion of exons 3-12 in frame but still duchenne? in the group Deletions"Hi Sif,
Our Son is missing exxons 2-21. We visited Dr. Kevin Flanigan at Nationwide Children's Hospital in Ohio to get some of the same answers. What he told us that we did not know, is that Essons work in groups of 3. To demonstrat this, he…"
Moria McMillen commented on PPMD's group Deletions"Keith and Andrea, Thank you both so much for the information! I will sign up for the new group.
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Moria McMillen commented on PPMD's group Deletions"Andrew, Thanks so much for the link to the Diagram! Acording to the diagram, if my son is missing Exxons 2-21, exxons 1 and 22 should fit together just fine, making it an in-frame deletion, meaning that he should have a much more milder form of…"
Moria McMillen commented on PPMD's group Deletions"Hi everyone, My son Nicky has deletions of exons 2-21. We live in Alaska, so there isn't a huge amount of Duchenne patients locally. I am a bit confused because I e-mailed one of the Genetic specialist that spoke in the webinar about…"
Moria McMillen replied to Patti Frank's discussion Exon 20? in the group Deletions"Hi everyone, My son Nicky has deletions of exons 2-21. We live in Alaska, so there isn't a huge amount of Duchenne patients locally. I am a bit confused because I e-mailed one of the Genetic specialist that spoke in the webinar about…"
Moria McMillen commented on PPMD's group Early Years (diagnois-age 6)"Hi everyone!
My son Nicky was potty trained at 3, but he has more frequent accidents, because if he is busy, or resting, it's so much more of an effort for him to get up and go to the bathroom. I talk to him about it, but don't…"
Moria McMillen joined MicahsDaddy's group
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Profile Information
- About me:
- I live in Alaska, and Own an Architectural Firm with my Husband. Between us, we have 6 Children.
- About my family:
- Our Familly enjoys hiking, and fishing in the summer in Kenai AK.
- Name(s) of child(ren)/individual(s) with Duchenne:
- Nicholas McMillen
- Age(s) of child(ren)/individual(s) with Duchenne:
- 4-6
- City:
- Wasilla AK
Moria McMillen's Photos
Comment Wall (2 comments)
- At 12:12pm on February 24, 2012,
StaffPat Furlong said… Hello Moria, Nice to meet you virtually. Please let me know if there is ever something I might do to help. SIncerely, Pat
- At 11:34pm on October 13, 2011,
StaffPPMD said… Welcome Moria! Look at that beautiful smile in your picture.. Love it! :)
I hope being able to connect with other families on this site who are affected by Duchenne is empowering for you and your family. Also, if you haven't already, we hope you consider registering on PPMD's main site, so that we can send you an information packet tailored to parents of boys who have recently been diagnosed: http://www.parentprojectmd.org/site/Survey?ACTION_REQUIRED=URI_ACTION_USER_REQUESTS&SURVEY_ID=5323
Don't ever hesitate to contact us by phone, email, or message if you ever need anything!
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