thank you so much. We think he is adorable too. He's growing so fast, 3 months already, seems like time just flies by. Carter was due March 4, so I never thought they would almost be born on the same day. I'm glad to hear the Ethan is in a study, that is excellent news. What type of study? What is Ethan's mutation? It is really strange how different clinics can be. We take Wyatt to Cincinnati (we live in Seattle) because of how impressed we were with the clinic there. Thankfully Seattle is changing their clinic. We will continue to go to Cincy, but are so glad that local boys in Washington are getting the care they deserve. I will look you up on facebook and send a friend request. Take care, I'm flying to Millwaukee Sunday to visit my sister in law. How far away is Madison? I would love to meet you folks if it works out. I'm facebooking you now. Talk soon. Melissa
Candace, your boys are so cute. I can't believe Ethan is already one, I feel like we just talked about his birth. It's amazing how quickly time flies. I've been busy myself, so I haven't spent a lot of time on PPMD in the last few months. We added another baby boy Carter to our family 3 months ago, so I'm not in the swing of things quite yet. I hope that you and the boys are well. I think of you often. Take care.
I think we talked very briefly about a year ago. I was more recently given your contact info from our MDA chapter up here in Minneapolis. I reached out to them wondering if there was any other families that were going to participate in the Exon 51 skipping trial in Columbus. We needed another family to bounce ideas/questions off of and they told us your boy/boys were also participating. Are they participating? Our son, Sawyer, is 7 with DMD and his deletion if 49-50. We are taking him to Columbus April 4th for a PT eval and hopefully to meet with Dr. Mendel.
HI, You have such a beautiful family!! I also have two with DMD... Mathieu is 9 and Malaky is going on 4 next month. Mathieu is a wonderful big brother to Malaky. It hurts to know they have DMD, but comforting to know they have each other. Take care!!
We live just out side the twin cities on the WI side (we are still packers fans). Our community is smaller so when it comes to school etc. we are feeling a little singled out. However this site and the MDA have been amazing! We are learning as we go along and the choices that we make for Sawyer we never look back and wonder "what if". Please feel free to lean on me for anything! Always remember we are families that must count the memories that we make and not the years that we have.
Blessings to your beautiful family -Brenna
Candace, I am so sorry, we are sending you all the strength we have over here to help you through this joyous and trying time. I know there are no words or comfort, but please reach out if you need me (or any of the other mothers on the board)...I know you and I were in the same boat, I was just way far ahead of you carrying Cassidy, and I know how scared and still how scared I am of having her tested (and I'm not a carrier), and she isn't even a boy...I can't imagine what you are going through...BUT it does look like JoJo is having the time of his life with Little Ethan and they will be able to grow together and learn from each other which will be a blessing for you. Lots of Love and prayers, Cori
We told Joseph about his brother on Sunday. His eyes got really big and he looked at little Ethan and then back at me and says "So he won't be able to jump or run or walk very fast either?" I could see the pain in his eyes as he asked me that. I asked him if he was okay and he says "I'm fine Mom". Later that night I was tucking him in for bed and he looks at me and says "It makes me sad that Ethan has the same muscle problem as me mom." Talk about making mommy's heart break all over again. What a sweet little boy I have. He loves his new little brother so much. I told him that it makes me sad too but now that means he gets to teach him all the fun things he can do even if he can't run or jump or walk fast. He thought that would be a good idea and he's very determined that he is going to teach his little brother how to have "lots and lots of fun". I cried so hard after I left his room that night. It was harder talking to him about that than anything we have dealt with so far.
Candace, I cannot imagine how difficult it is to marry the joy of Ethan's arrival with your sadness over the news you have received, and am so sorry you have to go through this. Ethan is a beautiful addition to the family, and Joseph already looks like a professional big brother!!
Hi Candace. I found out I was pregnant in close proximity with Aaron's diagnosis as well. Recipe for a basket case, for me anyway. Lots of hugs and prayers to you and your family. I know how hard it is...
Candace, just wanted to send my prayers on your latest news with Baby Ethan. Your boys are beautiful. As we all know, we need to make sure we enjoy every moment with them and be hopeful for their future. Donna
Candace, I am so sorry to hear that your baby was just diagnosed with DMD as well. What a frustrating new roller coaster to get on again. Even when you know it was a possiblity facing the reality is a whole new story. I will pray for you all as you process this news. God Bless!
I hope you are finding this site to be a little better than when you began. You know, even though you are having a boy, there is a 50/50 chance he will be fine - even if you are a carrier. If you are not a carrier, the % so much lower. DId you ever think of having CVS genetic testing done to find out if your son in womb has MD? They can figure that out at 12 weeks along. I'm not sure I would want to know news like that. Have you learned anything about being a carrier? How did you find out about Joseph's DMD?
How are you feeling these days? I can only imagine your bumpy, at best ride at this time. A new diagnosis and pregnancy hormones going crazy... But I'm glad I came across your page. Please feel free to vent to me at any time.
My son is Liam and he just turned 10. He is our only child and I'm a carrier. I had no idea because I was adopted and they really had no idea of what MD was when I was adopted. Liam is wonderful and very strong and completely mobile, which at his age is more rare, but this entire disease is so insane. I do not get how the same outcome and yeild so much variation during progression. Ugh!!!
Tell me more about yourself and your lovely family!!! Noreen
My grandson was diagnosed in May 2009 with dmd. He was 3 in June. I live in Miami but spend my summers on our family farm near Richland Center, Wis. That is where I grew up and am now coowner of the farm. I am a third grade teacher in Miami. My little Grant with dmd lives in Houston. The diagnosis is overwhelming. We are fundraising for research.we live and hope for a treatment or cure.My thoughts are with you and your family. My son and I will be in Washington dc. to lobby for funds for research in February. While in wis. this summer I met with Senator Russ Feingold and an aide to Senator Herbert Kohl to urge them to fund the NIh for funding for duchenne. Keep in touch and maybe we could meet this summer. Grant and his brother and my two other little grandsons came to the farm this summer. i had a pony there in hopes Grant will like horses and that would be a good activity.
You tell Ethan he MUST stay put for a few more weeks from us =) !!! One thing after another for you, poor girl! Now you need to remember that your little Joseph is healthy and strong right now, you need to take care of YOU! Remember that Joseph is not going to have anyone who understand him more then his little brother (regardless of the outcome) and hence you need to make sure that you relax the best that you are able and keep that little one cuddled up inside you for as long as possible... Have a movie night with little Levi for us (with popcorn, pj's, and grape koolaid teehee), our life is to hectic to even think about it, so if you could do it for us that would be great =). HUGS!
Firstly I am so sorry about not getting back to you sooner...when I heard of your situation I semi had a breakdown for you, had our beautiful daughter, and then moved...all within a week... Then with this move (moving from a 3 story to a ranch home) reality really hit in for me, and I didn't quite know how to even tell you that I am thinking about you constantly, you, your son, and your little Ethan are all on our minds, in our hearts, and definitely in our prayers. Stay strong for your boys, praying that little Ethan is on the other side of the fence... Words somehow I realize are no comfort in this situation, but if I could give you a gazillion hugs I would...if you need anything don't hesitate...