Hey Stephanie....sorry it took me so long....our computer had a virus, so we had to get a new one and it took a while to get everything set up. I am so sorry to hear about your son. It is so tough. We are coping. My husband and I cope in such different ways. My husband is a realist and I am a dreamer. So, I have had to come to terms with the reality of the disease, while he has had to loosen up on reality a little and hope for a cure. Both of us have had to lean heavily on God. God has a mighty plan for Beau's life. He also has a the same for your son. It is hard to live believing that, but we have to trust in Him and His goodness. That is how we cope.
I can't believe we live so close. Please call us when you come to clinic. 205-298-7288
We are taking Beau to see Dr. Wong in Cincinnati on the 26th of Jan. Have ya'll seen her?
How was your son diagnosed?
I'm so sorry about yor son and that you are a carrier. I am also a DNA carrier, it's not an easy thing sometimes to deal with. It makes me feel very guilty and responsible some days, but then I look at my beautiful boy Gavin who will be 3 in March and I can't imagine my life he hadn't have exsisted. Without you or me our sons would not have even had the chance to live. In my case I had a first cousin who passed away with DMD back in 1989 at 27 years old. We talked with genetic counselors and they said if I didn't know what mutation my cousin had they couldn't tell me for sure if I was a carrier. It could have been the case before I decided to have kids, but unfortunately I was a carrier and so is my 4 year old daughter. I only found out about my son because I couldn't get out of my head about my cousin, so I found out that a simple CK test could ease my mind. We'll it didn't and we were diagnosed with a deletion of 48-50. It's hard because I actually knew what DMD was and whether or not I was told the right information before having kids, my husband and I decided too, we really didn't know or even think it was REALLY a possibility. Anyway, you didn't know you were a carrier and that is not your fault. I understand your feelings and definately have my ups and downs. The main thing I try to do is live that day to day life and when I feel guilty or bad I look at my little guy and see that he laughs and is enjoying his life and he is happy. You have a beautiful family and believe me this is a tough road, but you are not responsible, it's just genetics.
Hi, my son was diagnosed at 6years and they did a biopsy on me about 6 months later it came out inconclusive so we didn't know if I was a carrier. He is now 12 and I am remarried and thinking about having another child so I had them test me again now that we had a gene sequence done on him and a few months ago I found out we have the exact same gene flaw which means I am a carrier. It's crazy there is no family history and both my sisters have sons and they are fine,so it's hard to understand and accept. I just try to take every day as it comes what else can we do!Send me a message if you would like to chat, Jessica
Hi Stephanie My son Christopher was 13 months when he was diagnosed he is now 21/2 the past year has been filled with many tears, a lot of anger and denial, but mostly disbelief. The day I got the diagnosis just plays like a video over in my mind every detail. Initially all I thought about was the future and it broke my heart and the tears never stopped. As days turned to weeks I realized all the time that I was obsessing about the future was another second that I lost in the present. Please let me know if there is anything that you need questions or just a shoulder. Rosalie
Stephanie, I know exactly what you are going thru. when my oldest son was diagnosed he was 3 and they told me that the gene comes from the mom I kept blaming myself saying I did this, this is my fault. I had really hard time coming to terms that I did not have anything to do with it. If you are planning to have more children do not let this stop you. My youngest son who was just 3 months old at the time when he brother was diagnosed is fine, they tested him right away. so it is possible to have another boy who is fine even though you are a carrier. We had no trace of anything like this in our family so it was a big surprise. They also tested my mother who came back fine and she is not a carrier. so it started with me that made it even harder not to blame my self. Like aptty says it does get a little easier. Some days I still find my self crying though and I just give Brenden a big hug and i feel better. I'll be thing of you! Barb ps. if you need anything or a shoulder to lean on let me know.
I am a carrier mom of 2 DMD boys. I have to tell you the guilt almost kills me everyday. We found out in July that Matt, my oldest was diagnosed. I was doagnosed a few months later, and my youngest Malaky, was just diagnosed.
Please keep faith that we will find a cure. If you need someone to talk to my email is firstname.lastname@example.org, we could arange to call one another if you like.
I am in this with you. We will cope with this and give our boys the best life has to offer.
We'll get through this momma, i promise...:)
My son Wyatt was diagnosed at 14months, Oct 31st, 2007. I can't believe it has been over a year. It was very hard in the beginning, and still hard now. We all deal with it differently, but in a way I feel we have an advantage finding out so young. We can find out more info and start therapy a lot earlier. It took a while but Wyatt now let's us stretch him and he wears his night splints without any trouble. It may take a while to get adjusted but just keep looking at your little boy and make every day count. I hope this helps.
My son Ryan was diagnosed on May 29th, 2008. A day I will never forget. At the time of his diagnosis he was about 33 months. We have all been there and deal with it in our own ways. Just hang in there and know that this site is an amazing place to find support, advice, and a wealth of information. They say it does get better.