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.