I'm not sure exactly where this topic should be posted but this might be a good spot.
I carry the gene for Duchene MD. My brother passed away at 24 with the disease a year and a half ago.
I've just gone through a cycle of IVF with PGD (pre-genetic diagnosis) which tests the embryos for the disease before the embryos are implanted back into the uterus.

I'm wondering if anyone knows anyone I could talk to, or if anyone had this procedure done. I'm also planning on an appeal with my insurance to see if they'll cover it.
The test with PGD only costs 6k. As you all know, raising a child with Duchene costs beyond that with medications, wheelchairs and ultimately for us, funeral costs.

Any thoughts or advice would be great!

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On the old site, Brody's mom was very open about having PGD. I should remember her name, but right now it evades me!!! Sorry! Good luck!!!!
Brody's mom is Erica or "Ric". She is in Ohio. She did do it. I did it too 3 years ago. My insurance did not pay for it either. My doctor sent a letter to our insurance. Good luck. I hope your insurance is more understanding.

fyi - My twins just turned 2 :-)
I found that lady on here and tried to email her but her address must have changed. I'd love to talk to her about it if anyone ever come across her again!

Thanks!
Hi Amy,
I've gone through two rounds of IVF with PGD, if you're still interested in talking about it. You can email me at mindy_lef@hotmail.com if you want to talk about it.
Take care,
Mindy

Hi,

Is there anyone dealing with this currently.  I have the mutation for DMD but found out before deciding to have a child.  I'm getting reay to start the IVF/PGD process to have a healthy child.

 

Please contact me if anyone has dealt with this. I could use to talk about it!

Jen Bauer

jennbauer@comcast.net

Hi Jenny,
I have had PGD. My first child has dmd and, although I'm not a carrier, it could of course be in some more of my eggs.
Personally i didn't find the whole procedure difficult at all. A few blood draws and some jabs but nothing that you probably haven't had before. The hardest bit by far was the 2 week wait after implantation to see if i was actually pregnant.
Just look after yourself as you normally would and I'm sure all will be fine.
Best of luck and, for the record, it worked 1st time for me. I now have THE most beautiful 9 month old son - much loved by his big bother.

Lisa!!!

Thanks so much for your response.  I am so happy that it worked out for you! I know from experience how much a child affected with DMD needs a sibling.  My brother who is 30 and I are so close and he is my inspiration. 

At this point, I am getting ready to start the drugs. It's scary but exciting at the same time!  I feel confident with my choice to do this and your response has made me feel more at ease.  It's nice to know that eventhough this is a long process, it can be quite successful! 

I wish you the best with both of your children!  If you ever have any questions from a person dealing with an immediate family member with DMD for almost 30 years, don't hesitate!

Jenny

Hi Jenny - I posted above. I now have 2 children from the PGD process - a healthy boy and girl (one frozen cycle, one fresh). Let me know if you need anything at all - mindy_lef@hotmail.com. The best piece of advice I got about the process was to take it one step at a time, and just to keep telling yourself "so far, so good." Focusing too far down the road was too anxiety-producing for me, so that helped a lot.
Also - would love to get your insight sometime into raising other children along with a sibling with DMD - how to balance the feelings of everyone in the best way possible... Right now, we're struggling with getting my 3 year old to be physically active while making sure the DMD 8 year old doesn't over-exhert. I'm sure it's just gets more complicated from here...
Mindy, I'm so glad you posted your comment about a frozen cycle of PGD. We're looking into this as we have 4 frozen, but i don't know anyone who has had experience if this. I'm so glad to hear it worked for you!
And Jenny, i forgot to say, be aware that there is a greater chance of twins (or more) with all ivf and especially PGD (something about the cell removal process encourages embryo cleavage). You may end up with multiple blessings!
So crazy that this discussion has come up again. I have a 5yr old with dmd, 2 yr old non dmd from pgd and have started getting ready to put the last two girls in,frozen cycle. Its good to hear from the girl who got pregnant from frozen. S little nervous, but super excited. Will keep u all posted. Worst part is waiting for preg test and thru 1st 3 months. Good luck all

Thanks all for all your great information!  I was actually really nervous about starting the process and specifically the drugs!  It is great to hear all these positive experiences.  I am pretty lucky I knew I was a carrier my whole life so I can get my one healthy child.  Unfortuntaly, for me I am a manifesting carrier so I am weak and it affected my heart but I am staying positive!!

I wish you all well and I will come back soon hopefully to report another success!

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