I have two sons with DMD , but my oldest passed away this morning about 8:00.  He was a fantastic kid. I loved him so much and will miss him with all of my heart . Not even sure how I'm going do this but here we go.  He was only 13 years old with DMD. My other son with DMD is 9 and is also a great kid. At least he's not asking too many questions ------Hug your kid today and tell them you love them. You don't know how long you have!!!  I thought we'd have at least another 10 years but I was wrong big time. I miss him so much.

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Dear Bob,

My thought, heart and pray are with your family. When can Duchenne be ended ???

Trinh

Bob, I'm so, so sorry for your great loss. Prayers for you and your family. I highly recommend a program called Grief Share -- available in churches throughout the country. It really helped me after the completely unexpected death of my little boy. Hugs to you all. 

 dear bob am so  so sorry pl know that your family will be in my prayers tonight .kimmy

Bob,  I am so sorry for your loss and yes at a such a young age.  There's been too much of that lately.  Prayers for peace in your hearts.  Donna

Oh Bob, I am so sorry you had to write this. My son Simon (DMD) will be 13 next week, and my other son William (no DMD) is the same age as your Carter. My thoughts are with you and yours. Andrea

Bob I'm so sorry for your loss. Every time I read a post like this I wish I could take some of you pain and sorrow onto my shoulders - just for a bit, to give you a rest. My thoughts are with you and your family. Take care.

Hello Bob

From a parent who has lost a son to complications arising from DMD,please accept the heartfelt condolences from my family and i .We stand with your family in prayer at this painful period.One day we know something will come out of all the effort from the DMD community that has gone into research and advocacy.Please be strong for your other boy and the rest of your family.Thanks and nice weekend.

Dear Bob, I am so very sorry to read your post.  I can't imagine what you are going through, but please know that our DMD family is mourning your loss.  I am going to hug my babies right now.

Melissa Staffenhagen, Washington  

Dear Bob,
Our son is 13 with DMD. You and your family are in ours prayers.

Hello Bob,

I have no words to convey my sadness at reading this. Losing a child is a pain I hope to never have. My DMD son Kyle is 19, happy, full of life and in his first year of college. Was Jonah not on any steroid?

           He was on prednisone... calcium...Pepcid ac...and a couple for his heart...   We're still not sure why he died so suddenly.  I have another son with DMD , otherwise I would crawl into a corner for the rest of my life. The pain is insurmountable!
 
Fred Luchetti said:

Hello Bob,

I have no words to convey my sadness at reading this. Losing a child is a pain I hope to never have. My DMD son Kyle is 19, happy, full of life and in his first year of college. Was Jonah not on any steroid?

Get your other boy on Deflazacort as fast as you can. My heart goes out to you Bob. Be strong, keep the sadness to your alone time and when with your other son, let the happiness out, all of it, as much as you have.You have the power within you to be happy. Choose to be so. Hugs to you my friend.

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