Much thanks for sending message to me. I just joined PPMD for a few weeks. My son was diagnosed DMD though we are waiting for DNA test result. I do not know his deletion yet. I'd like to make friend with you all and want to receive yr advise as much as possible.
The biopsy will tell you for sure what is going on with Tanner. You just need to ensure you use a pediatric anesth. during the procedure. The procedure itself is quite simple and Liam was off to a party later on in the day after his. Everyone thought Liam was a Becker, but he's not. But we are intensely lucky that he's not in a wheelchair and that he still runs all over the place. But kids like Liam are extremely rare and we are completely blessed by what's going on with Liam.
I really feel, in my heart that our boys will be helped and the face of MD is on the verge of changing for the best ever.
Good luck you and Tanner - I will always be thinking of you!!!
Last year we didn't go to the conference because his diagnosis was still so new. We were still in shock I think. When in June is it? We are participating in the Rock and Roll Marathon on June 26th for Run for Our sons. I've looked for conference information about dates on the PPMD site but I can't seem to find the information. Do you know when it is? I think I'm in a better frame of mind too. It took a lot of tears, prayers and re-evaluting my life to get to a point that I don't cry every single day. About a week after we found out, I looked Wyatt straight in the eyes (tears flowing) and promised him that he would never see me cry again. (of course I still do, but I don't want him to miss a happy life because we're crying all the time.) Instead of tears, I raise money and awareness.
If you can get me some information about the conference or tell me where to look I would appreciate that very much. I would love to go!
sorry it took soo long for me to get back to you. I should make it a habit of checking the email more often. Toms River is not that far from us. We are in Avalon, more south a bit. My son Gabe has "intermediate" DMD/BMD. He is my 3rd of 4 boys. I am being tested right now to see if I am a carrier. The doctors dont think so because its not in my family and my other boys dont have it. Gabe just turned 7, September 24. He has a duplication of 18 and 19. As of now, the doctors cannot find anyone else who has his exact duplication. We dont have him on steriods as of yet, Dr. Finkle said NO the last time we were at our appointment, but, I am not sure if we will. I still have not done enough research yet.
I am hopeful that we will see a treatment for this for our boys. My doctor is certain of this as well. I research a few times a week to check on the status of everything. I am hopeful. I hope you stay hopeful as well.
How are you doing? I see you have 6 kids.... WOW.... I thought I was a bit crazy with 4, and even more crazier for wanting another one. Im slowly talking my husband into it. Hes coming around! I told him, I can not go through life without a daughter and I dont care what color she is, I just want one.... Hes getting it! lol...
I look forward to your message. I think since we live close together, maybe we can get the boys together. I think it would be important for my son and I am sure yours to know a few kids that are going through this.
Hope to talk to you soon.
We started Sam on Deflazacort when he was still pretty strong. He is still fairly strong and has good energy. It's really hard to know exactly what is having an impact on Sam. That's part of the reason we chose to have the biopsy done. We were looking for some answers. After the unusual results we are still looking.
Has your doctor discussed Deflazacort with you? We started talking about it several years before we decided to start Sam.
Sam sees Dr. Wong in Cincinnati. We are thankful to have found her since our doctors in Dallas aren't as proactive and up on the research.
We will be at the conference. In fact, we are going to bring all of our kids. My parents were going to keep the boys home, but they had a family emergency so we decided to bring all of the kids. Some of their friends will be there as well so it will work out okay.
I'll look forward to meeting you. See you Thursday!
Sam does have a large deletion too. Although it is in frame he has a Duchenne dx. Recently he had a biopsy done and the results were a little unusual. His muscle is not normal, but it looks better than they expected. The staining showed zero dystrophin present so we are not quite sure what is going on. Some other doctors are going to take a look at the tissue and see if they can make sense of it. He could be upregualting Utrophin, but we are not sure. We still have more questions than answers at this point. Sam is doing very well. He has been on Deflazacort for 2 1/2 years now and we are seeing a benefit from that as well.
I am not sure that this really answered any of your questions. We still have many ourselves!
LOL - Dr B is in our corner... I'll be bugging you all wkend - It's just me & Levi, the rest of my men are going TURKEY HUNTIN!!!! something else to mount on the walls. miss ya, Gosh I wish you lived closer.
My son Mason is 3yr old- diagnosed with beckers MD a year ago. What is this FACES. we are in PA, not too far from NJ. I would love to hook up with some other families dealing with MD.
Hi again! It took me awhile to figure out this whole website thing too. I have heard good and bad stories from DuPont. I happen to love our dr. She is really great with my son and answers all of my questions. Sorry you had a bad experience. I don't think I am going to go to Cincinatti. I feel that my son is comfortable with the drs. and it takes my son a long time to warm up to people. So glad to hear from you. Keep in touch!
Hi Dana! So glad to hear Tanner is doing so well. And thanks for the update on the juice. Karsten is doing great and yes we heard back from Dr. Wong. Karsten has the same thing as Tanner, a bit smaller deletion but the same. I am taking this as good news. I can't wait to share this information with Karsten's doctors here. I am so glad we found each other. I have new hope.
On another note, Karsten and I participated in the MDA Stride & Ride today. We were able able to raise almost $2500 along with another mom here. It feels really good to help!
Hi! I just saw your post on NJ families. We live in Absecon NJ. We are not that far from each other. The Faces group is a little too far for me to go. Maybe in time we could start some sort of support group for parents in our immediate area. Talk to you soon!
Hi Dana - thx for reaching out to me... it means the world to me. I'm still in a fog but have to find the courage to keep moving forward. We don't get Levi's genetic tests back til 3/27... it's hard but I know what they are going to tell me.
All we want is hope for the future. I've been talking w/ other moms & we all feel the same - Good things are coming for our precious boys. Thx again for contacting me