Hello all. I am new to the boards and have finally decided to post. My daughter, Sydney, was diagnosed with congenital MD, merosin positive, subtype unknown back in 2004 via muscle biopsy. She was a floppy baby, but did walk by 15 mos old. They told us she was mild, and her neurologist at the time, told me he didn't think she would lose the ability to walk. That bit of information has carried me mentally for years. She was just seen in the MDA clinic a couple weeks ago and is doing well. No physical therapy, walking good and running, climbing, swimming etc.. , She has some achilles tightness and will require night splints, but is not toe walking. She will turn 6 years old in a few weeks. She is a very happy and smart little girl who really doesn't think there is a thing wrong with her. She is weaker than other kids but continues to impress me and do more and more all the time. Thank God! Still, they do not know the cause of her MD and with all the advancements in science, I am left feeling scared and worried about how she can be cured (if gene therapy, etc.. works) if they do not know the cause. Of course, I tried to educate myself following the appointment, and went on the internet, which is something I have not allowed myself to do since the beginning of all of this. I scared myself to death, and keep trying to remind myself that the disease is so variable in everyone. I am looking for a ray of hope, someone that understands what I am going through. I just don't know what to anticipate for her future and am finding myself very scared right now. Thanks!

Thank you so much for your reply! In response to your inquiry to her CK levels, the last time it was checked it was close to 800. As far as being "floppy" that is the term the doctors use, but I connected it to when you lifted her under the arms, it felt as if she could slip through. She didn't have much strength in her shoulders. She was somewhat delayed at achieving her milestones, but did achieve them all with help from physical and occupational therapy, and achieved them within a normal time frame, albeit, on the later side of that normal time frame. I will keep your son in my thoughts and prayers. You sound very strong, and so does your son. I feel that this disease is kicking my butt more than Sydney's. You are right, children are so amazing and we WILL get through this. Thank you so much for your support & advice.

Hey cperki31, welcome to the boards. First, let me say, I'm sure your right about this disease kicking your butt more right now than your daughter's. Worrying is a big butt kicker!!! I know from experience that you are so worried about what the future holds, but try and just take one day at a time and enjoy each moment. I know this is often easier said than done, but just enjoy each moment. Children grow up so fast. And just like Irishgirl said, "You are not alone", unfortunately there are many people out there that feel just like you, although I know at times you feel like no one really understands what you are going through. So just come to this board and let out all your worries and anxieties, we all understand here. Trust me!!! And keep in mind that it is normal to worry about your daughter, so don't let ANYONE make you feel like you're being silly for worrying so much, if they were in your shoes, they would be the same way.
Please keep us updated on your daughter's condition and please feel free to ask any of us on this board questions. It is good to be able to talk about your concerns, even if it is just over the internet. I know my latest posts have been very helpful for me!!!!******* Thanks *Irishgirl* for listening to my worries!!!!!
Have a great weekend and keep us updated!!!
CJ's Mom
Lori

Thank you. You hit the nail on the head! I am really glad I found this board. I have been carrying around my fears for years, with no one to talk to that really understood. I just don't want my anxieties to get in the way of enjoying every moment with her. I will keep you all posted.

Sydney's mom
Casey

Hi cperk31,

I'm an adult with MD, who was slow as a child so I kind of know what Sydney will be in for. There will be ups and downs but let me tell you, I have no bitterness or regrets. Life has been good to me. I have a wonderful wife and two healthy daughters. I'm blessed and very happy at 47 years old. I'm still walking, but with great difficulty. I realize all MDs have different symptoms. Mine is LGMD.

Also let me share that your little one is in good hands with the SE Michigan MDA. That's where I've gone for the past 6 years. They've been fantastic to me and they'll be there for you.

Visit this board anytime you need to vent.

Mark