Military Families with DMD

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Military Families with DMD

Members: 13
Latest Activity: May 10, 2016

Discussions

Deflazacort

Started by cristina chandler. Last reply by Richard M. Pyryt Jul 17, 2011. 2 Replies

Out of Touch

Started by Linda. Last reply by Sarah Nov 13, 2010. 2 Replies

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Comment by Lynn Bartels on November 13, 2010 at 9:58pm
Thank You Donna I will check that out for sure
Lynn
Comment by donna on November 13, 2010 at 4:49pm
hi, didn't realize there was a group for military with DMD. We are retired now after 28 yrs of service. My son is 13 and we live in Washington state. I just wanted to make sure everyone on here knows that if they are active duty to be sure their son is in the ECHO program. It is an added benefit to tricare. It helps cover things that tricare would not normally cover. It is really worth checking into if your not enrolled yet.
Comment by cristina chandler on August 7, 2009 at 8:42pm
Hi everyone
My name is Cristina, my husband Shane is in the Navy, we have two boys Samuel 6 and Cristus 4 they both have Duchenne. We are thinking in start them in steroids, does anybody knows if Tricare covers deflazacort?
Thanks
Cristina
Comment by Lynn Bartels on May 2, 2009 at 7:59am
So our Compassionate Assignement was approved and we get to stay here for the time being. Nothing bad about FT Bliss I just feel that staying here and taking him to Cincinnatti Childrens is the best thing for him right now. I am grateful that my husbands command is so supportive. I hope all of you all are doing well and have a lovely weekend hopefully your weather is warmer than ours.. I think we might hit 58 today lol
Comment by Lynn Bartels on April 3, 2009 at 9:13am
I am sorry Tricare is the way it is, My son is 8 so we haven't had too many times of butting heads with tricare yet. We just got approval to take him to Cincinnati Childrens but the meddac commander had to approve it, so that was a hoop jumping fest but well worth it. We are trying to do a 4187 to remain at Ft Drum not my favorite location but if we move to FT Bliss he can not go to Cincinnati so keep your fingers crossed. I hope everyone has a nice Easter
Comment by Cheryl Markey on January 26, 2009 at 1:15pm
Hello, I grew up a Air Force brat and was married to my son's dad who was also Air Force, we learned of Adam's diagnosis of DMD while stationed at Myrtle Beach AFB SC, we returned back to Maine when Adam's dad still active duty and Aircraft Maintence cross trained over to being a recruiter, this enabled us to move back to Maine to bring Adam closer to family ( I grew up in the military anddidn't know my relatives that good, so, I wanted Adam to grow up knowing what grandparents are, what aunts and uncles are and of course cousins! Well, his dad left us in 1993 after we returned back to Maine in 1991. So, this left me a single mom from then till May 10, 2008 when I remarried. And I always said that if I ever remarried that I wanted Adam to give me away and he did.
Adam had Tricare thru his dad till he was 18 and also had Mainecare at the same time, he has been receiving SSI since we moved back to Maine. Only thing I can say that I had trouble with re; Tricare is they consider everything such as a hospital bed to be a luxury, or a shower rollincommode chair to be a luxury.....they don't want to pay for anything to give the boys a good quality and comfortable life. Anyways between Adam having the Tricare ins thru his dad and Mainecare ( state ) we haven't had to pay for any clinic visits pertaining to DMD, or any other hospital visits or surgeries or his meds. or his wheelchairs, etc..

Hope all has been well with you and your love ones,
Cheryl

P.S. don't forget to check out my fundraiser: "Scents for Duchenne", which Adam and I started yesterday.....you can learn about it on my page
Comment by Lynn Bartels on January 25, 2009 at 9:45pm
I haven't used the EFMP respite care yet Filled out the paperwork but I haven't felt the need quite yet. I got Jacob a Parking permit the other day which I thought would be more of a hassle than it was.
I saw the post on the chain of command My husbands current one has been great I am not sure if that is because I am the FRG leader LOL. I am kind of nervous about the move to Ft Bliss In July though. I am kind of excited The weather will be so much nicer the boys will not have to stay inside 6 months out of the year so that is a plus. Has anyone had any dealings with Balfour Housing. I have only dealt with Mountain community homes and I am hoping they are easier. Hope all of you are well
Is anyone going to the Advocacy Conf?
Lynn
Comment by Kelli May on January 22, 2009 at 10:00pm
Hello! My name is Kelli and my husband is a Marine reservist who is currently in Iraq, but this time as an army contractor. Complicated, yes! He was an active duty pilot until 2006, when he got out to be home more after my son was diagnosed...didn't actually work as planned, but that was the intent! We live in San Diego and have Elijah, DMD, who is 9 and Chloe who is 12. Glad to see this group exists now! :-)
Comment by Linda on January 10, 2009 at 11:26pm
i do not utilize the efmp respite care just because of the hassle of dropping them off and picking them up. i had so much i had to do with school and all. please email me at lcama78@yahoo.com. id like to exchange phone numbers if thats okay and talk about it.
Comment by MommaToo on December 30, 2008 at 10:06am
My husbands chain of command doesn't know I exist! So do you get respit care through the ACS there in Hood? I have the application packet, but havent filled it out yet. I am faily new to the area, and dont have a clue on who would be able to actually provide the care for me.
 

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