Will's World.............

Char,

I had not talked to you in a while and I thought I would check in.  How is Will doing?

Stefanie

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.

Love, Melissa