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 heartfelt condolence to you and your family... May you find strength within yourself to handle the grief ( for your younger son).


                                     Yes, Jonah broke his leg 2 days earlier.
Fred Luchetti said:

Hey Bob,

I hope the the coming season will be kind to you while dealing with your huge loss. You are still in my prayers. I wanted to ask you, did Jonah suffer a fracture before his sudden passing?

I'm not sure who you are and I'm sure you mean well, but.. DON"T PRESUME TO KNOW HOW MY SON DIED!!!  I understand the boys are more prone to fat embolisms than healthy children. The autopsy  did not reveal an embolism. He died from cardiac dysrythmia. AND THANK YOU FOR BRINGING ALL THAT UP AGAIN AND FOR ME HAVING TO STATE WHY MY SON DIED!!!

Bob, I am sorry to bring this stuff up for you. It is not my intention to do harm but I have to tell you that the last clinic visit I had with my son scared the crap out of me. I immediately thought of you and Jonah.

Bob, I'm so sorry for your loss - you sound like a wonderful parent who will have made both your boys lives happy and enjoyable. Thinking of you and your family at this Christmas time. Take care.

Bob, I know you don't know me, but I want you to know I'm thinking of you and your family right now during the holidays. I'm sure you've got lots of happy memories of Jonah that you can call upon right now and remember him as a happy kid - who was obviously very loved by his family. The holidays are a difficult time to feel someone's absence but life must go on.. I hope you can enjoy your other son and have a lovely holiday. I wish you all the best! x

Frankie

I want to thank everyone for their thoughts and prayers.  It is very hard to put a smile on my face, but my wife and I will try and keep the holidays as normal as possible for my other son. Merry Christmas to everyone and a BIG CHEER to finding a cure for our boys in 2014!!!

If you dont mind my asking what were the heart issues your son had. My son is 8 years old and he has left ventricle hypotrophy. Every time i read something like this it makes me scared knowing whats going on with my lil one,

Jonah had an slightly enlarged heart.

Bob, So sorry to hear about Jonah.  It strengthens my resolve to continue to do things with my sons while they are able, since you never know when the unexpected will happen.  Our thoughts are with you and your family.

Take care,

Laurie Barton

Thank you....... END DMD!

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