bob
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  • Fond Du Lac, WI
  • United States
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bob's Discussions

Jonah died today

Started this discussion. Last reply by danielle Mar 23, 2015. 25 Replies

              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…Continue

Not sure about steriods

Started this discussion. Last reply by lisa burke Sep 23, 2012. 4 Replies

        My oldest son,Jonah, has DMD. He is almost thirteen and still walks some and uses a scooter at school. We stared prednisone back in July '08 and we've seen the side effects as you all know.…Continue

 

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Latest Activity

danielle replied to bob's discussion Jonah died today
"i am so sorry to hear this it breaks my heart every time i read that a child passes way to early no parent should have to bury there child. "
Mar 23, 2015
KACPRZAK-CELKA replied to bob's discussion Jonah died today
"be bygonest cause?"
Mar 17, 2015
bob replied to Traci Anne Hoffman's discussion I have questions about md
"I think you are praying for what every parent prays for , md or not. I have 2 sons with md. I lost one of them after he fell and broke his leg. He developed a blood clot and had a heart attack. The medical examiner listed his death as related to md.…"
Jan 22, 2015
bob commented on Kurt Main's photo
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Ramblin' Wreck

"You go Charlie."
Jan 22, 2015
bob replied to Patricia's discussion Wheelchair in school
"Eventually it becomes safety over everything else. His back pain and leg pain is obviously not good either. When my oldest started in his chair we made it out as a cool thing and the other kids would ask him for rides.lol  Eventually, everyone…"
Sep 11, 2014
bob replied to Shawn Blais's discussion I am having a tough time dealing with my sons broken femur
"keep him active. This whole thing is completely exhausting ,but, make a conserted effort to do more than before. go on walks.. go to the park.. go to see a show...get out of the house...have movie night.    Make this leg thing an…"
Jul 26, 2014
bob replied to omaira's discussion Struggling to cope
"My sons both have DMD. found  out Jonah had it in 2008 and Carter in 2012. I remember watching a football game that and as the leaves fell off the trees I could literally the weight of them and was feeling buried with them. In the real world I…"
Jun 11, 2014
bob replied to Dawn Steele's discussion Waiting diagnosis
"I'm sorry. I hope it isn't Duchenne , but from what you're saying it sounds like it. Your story is much like mine and I'm sure much like most in the community. My oldest, Jonah, did the same things  i.e. slow up the steps,…"
Jun 9, 2014
Andrea Cleary commented on bob's photo
Thumbnail

317

"Brotherly love"
Feb 19, 2014
bob posted a photo

317

carter and jonah
Feb 19, 2014
bob replied to bob's discussion Jonah died today
"Thank you....... END DMD!"
Jan 24, 2014
Laurie Barton replied to bob's discussion Jonah died today
"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…"
Jan 23, 2014
bob replied to bob's discussion Jonah died today
"Jonah had an slightly enlarged heart."
Jan 23, 2014
danielle replied to bob's discussion Jonah died today
"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,"
Jan 22, 2014
bob replied to bob's discussion Jonah died today
"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…"
Dec 25, 2013
Frankie Butler replied to bob's discussion Jonah died today
"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…"
Dec 24, 2013

Profile Information

Name(s) of child(ren)/individual(s) with Duchenne:
jonah and carter
Age(s) of child(ren)/individual(s) with Duchenne:
7-12, 13-18
City:
fond du lac
State:
wisconsin

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