Hey Char, how is everything going. I haven't talked to you in so long. Things are crazy around here. My daughter is graduating in a few days. Always something going on. Hope you guys are doing well. Take care
Your page shows that you have 100 photos. #15 to 20 are of my family! I was looking at them earlier today when I read your comments about the punch biopsies, when I saw that your son was in the 7-12 age range like my Simon.
Hi Char. I have seen many of your posts around the website. I can tell you have loads of knowledge to share! We are not newly diagnosed. Cody is 8 and has been diagnosed since he was 6. I am his step-mom, so I don't have all the information on which doctors he sees. I know he was going to Cinnci once a year for treatments and tests, but I think that has been put on the back burner due to financial reasons. I wrote down the name of the Dr that several people were talking about that came from Denver to Seattle. I am going to pass it along to his Mom to see if she would be willing to take him up to childrens for possibly the 'next best thing' to Dr. Wong. I try to research as much as possible and stay educated on Cody's condition. Even though I am just step-mom, I care tons!! As far as where he is at progression wise, we recently had to take him off the steroids due to weight gain. It's only been about a month since he quit the prednisone. He is noticibly weaker. His moods seem to be a bit better. I feel like we are just teetering on weather he needs to be in his wheelchair. We live in Orting, but I work in Tacoma and we are always out and about. I haven't read all about you so forgive me for asking, I assume you have a DMD child also? Tell me a little about your situation.
Hi Char - My son Eli turned 7 in September. I do understand that each child is different in all of this - which is fine. I just like knowing that there are more of us out there - there's a lot of comfort in that. Currently, I am in Germany working with the DoD, but my support center/home address is Dallas, TX. I do have family in Philly so I am considering making a visit to CHOP. Where are you?
Thanks for responding...this is the first time I've reached out and so I appreciate you taking the time to comment. Katherine
We are very excited about the baby. Wyatt is too. I ask him where they baby is and he puts his cup of milk up to my belly button to give Carter some milk, it is very cute. We are so lucky to be able to have a big family. Tom and I are very blessed beyond anything we would have ever imagined. Wyatt was actually diagnosed in Seattle at 10 months, we went to see Dr. Wong when he was 15 months. But Dr. Wong did confirm the diagnosis. Like I said, it's not really jumping, but he thinks it is. Wyatt is a deletion of 49 and 50. We are looking forward to Exon Skipping very much. I hope that it works like they say. I pray every night that a doctor will help ALL of our boys. You are right, we don't really know what will happen in the future. We can just be hopeful. It's justs so hard watching our babies struggle. It is really hard to be positive all the time. Like I said, if you are ever sad or happy or angry, whatever, call me. We are in this together.
Our baby is due March 4 and he is a boy. We are naming him Carter. Thankfully, because of IVF/PGD he is a healthy baby. We are so lucky that he won't have the struggles that Wyatt will have. Each of our children are a miracle to us, and having Wyatt was one of the best things that ever happened to me. He is the most loving kid. So no matter the issues that he faces, we are going to face them head on and beat this horrible disease.
I am so lucky to have met you. I hope that we can continue on this battle together. Char, if you ever need anything, even just to talk, call me. If you don't have my number let me know. There are days when I'm sad and lonely and just need to talk to someone who understands. If you ever feel like that, you can call me morning, noon or night.
Char, well, what Wyatt does isn't really jumping. He just calls it that. He more hops, but he's only 2 so I wouldn't expect him to jump anyway. Not to mention, like you said boys with DMD can't jump. Even though he is so young, I do notice the differences between him and my niece who is the same age. She practically runs up the stairs, where Wyatt still has to crawl up the stairs. I wish that Dr. Wong was wrong, but no he does truly have DMD.
Char, how are you? I haven't talked to you in so long, I hope everything is fine. I just wanted to wish you a happy holidays and let you know that I think about you and will every day. The baby is almost here so I promise to share the news of his arrival ealy next year. Take care my dear friend.
I wanted to let you know I had recieved your message. I lived in Ft Lewis once before wehn I was 13 but that was a long time ago lol. It will be interesting to move back I think my frustration is mostly with the ARMY at this point. We should be out there sometime in July it looks like. Not terribly excited about the dr It took me 2 years of fighting with he army to get Jacob into Cincinnati that it feels like starting over when he is doing well. I am probably just whining too much lol. the system is so frustrating right now. Hope you all have a nice Thanksgiving.
How are you? How is Will? I've been thinking about you and praying everything is going okay. I know this must be so stressful and hard to deal with, please let me know if there is anything I can help you with!!
Thanks for your email--our grandson was here in July and probably won't be back till next summer. Will certainly let you know when he comes. He also goes to Dr. Wong and his parents are very active in PPMD. I am learning how to use this community page so that's all I'll say for now. God bless--Marilyn
I think the Acceleron-Shire co-development deal is an excellent development and one that had to happen. Shire has much deeper pockets than Acceleron and can really help move this drug through the more expensive later phases of testing. Shire also has a good reputation in the rare disease area and Acceleron chose their partner for this program very carefully. Shire would have done extremely intensive "diligence"--reviewing the science and the drug development plan pretty carefully--before sinking so much funding into the project. This obviously doesn't man that everything is going to work but it's encouraging
Well, we can still get together for a fall get-together of some sort.
Yes, we will be at the auction- we were able to put a table of 10 together. That is wonderful that Pat is speaking, I didn't know that! It should be a great evening. I will have my parents, brother and sister-in-law, Damon's dad and his wife, and some friends with me.
I look forward to seeing you then, and let's definitely get our families together soon. I know the kids would love to see Will again. I hope he has a great first day of school.
I'm so sorry, I didn't get your message right away the day you called and were sick. I checked my messages and got it, but wasn't sure which day you called. Then I just got back last night from Cincinnati. I went by myself this time with Gavin. We had a very good visit, things are good so far with Gavin.
Call me whenever you get a chance, I know it's hard because you are working full time. I've been pretty caught up with the end of the school year with Isabella and Gavin and juggling baby Giuliana. I'm quite a busy Mama these days, so sorry I haven't been in very good touch with you!!!!!!
Hope you are feeling better and Will is doing good.
Of course we will support your efforts for DMD, I can't wait to see you again. I have a friend and her boyfriend as well as my sister-in-law & brother-in-law coming. It will be alot of fun. Wyatt is great, thank you. We will be back in Cincy in September. Hopefully he'll have a good check up.