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A New Journey
I had often wondered on my journey where God would take me. As a young lady I had dreamed of falling in love, getting married and having a family...like any female would. But as life would have it, things didn't go according to my plan, of course. Things went a whole different direction. A direction that maybe would be full of surprises. A lot of good and then some bad. Either way it would be a journey directed by God.
Once my son Tim was…
ContinuePosted on August 30, 2012 at 11:45am 0 Comments 0 Favorites
I'm sorry I have not been here for such a long time. So much has happened since we were here last.
Tim is doing well-better than expected. I can still him his roar of laughter from his room even with his door close. My son, Timothy, now 23 yrs old is so positive about life and full of laughter that he is not let letting this disease get to…
ContinuePosted on August 30, 2010 at 6:24pm 0 Comments 0 Favorites
The Will to Live...or die.
While answering one of Oprah's Facebook questions, I ran into a sister of a boy who had duchenne and she told me her brother died at 17 & at home because he was always in so much pain that nothing matter but death.
I had wondered how could there be so many boys out there with Duchenne musuclar dystrophy who suffer greatly that they think the only cure there is to the pain is death. Yet, there are so many young boys and men who just…
Posted on November 10, 2009 at 6:30am 5 Comments 0 Favorites
Posted on July 26, 2009 at 5:30pm 3 Comments 0 Favorites
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We have a little boy Diego, who is 5 with DMD and he takes Deflazacort (Calcort) - 12 mg daily. We just arrived to Disney in Orlando,Florida and realized that we left his medicine at home!!!!!! I understand he cannot be without Deflazacort more than 24 hours and Diego does not have medicine for tomorrow. By any chance, is your son using Deflazacort? If he is can we buy or borrow any from you?? We are willing to drive and go anywhere to get the medicine and we can replace within 10 days guaranteed. Sorry to bother you wiht this! but are trying to avoid major interruptions for the boys and extendended family due to this...
Thanks for your kind attention to this,
Leslie
Here is my email and phone number: guzman.l@pg.com or (513) 765-9416
I saw a post that Timothy is in the hospital and I wanted to let you know that I'm praying for both of you. I have a 6 yr. old grandson living with DMD and "ALL" these young men have a special place in my heart. Just wanted you to know many prayers are being sent up in Timothy's name.
We were just in Gainesville today for my son to finish his last visit as part of a 2 year study (all DMD, but had to do with MRI as a diagnostic tool)...anyways, we used to live there and my son who is now 13 was diagnosed at age 2.5 when we lived in Gainesville. His former PT (who went on after we moved and got her PhD in PT) is the one who is a major player in the study. OK so UNrelated to the study, we were talking about kids with DMD, etc. who we 'know' through various means, and I mentioned you and Tim, having read on here and on the Yahoo DMD support that Tim is in school at UF, etc. She would LOVE to meet you - she is wonderful and you will love her. Her name is Claudia Senesac. You can email me at wakuller@comcast.net or send me a message on here and I will send you her contact info. Hope all is well there - it was great to see all the graduates exiting the O'Connell Center today!! I went to school at UF back in the 80s, and then we returned to Gainesville when my husband went back to school in the late 90's/early 2000s. He finished in '03 and we moved to Atlanta for his job.
Take care!
Allison
I'm glad he is doing better
I will continue to keep him && you in my prayers.
I'm 19 years old & have DMD
I just wanted to let you know, that I have been reading your College Mom's Blog.
I hope your son is doing better =)
Is this his second year in college????
Thanks for the information about other girls with DMD. I believe I have talked to the mom from Alabama. I read about her daughter in the QUEST magazine a year ago.
It is hard finding girls (especially as young as Ally) with DMD. Right now, the only girl with the same combination of diseases as Ally lives in Italy. She is four years older than Ally, and we don't know much about her. Ally has adrenal hypoplasia, glycerol kinase difficiency, and x-linked cognitive delay along with DMD. Right now, she is doing wonderfully. Just this week, she learned how to put her socks on and turn the TV on and off.
I do want to thank you for helping us with contacts, adn I would like to meet other parents with daughters who have DMD.
Thanks for your support!
Sincerely,
Kim Bridwell (Ally's Mom)
Stefanie
I added you as a friend. I will be coming to you for advise on college since my son, Anthony will be a sophmore this year in HS. He is already talking about wanting to go to Princeton University so I will have my work cut out for me.
Anthony has had a hard time accepting the new age limit at MDA Camp (21 to 18). Did your son ever go to MDA Camp and if so, maybe he can sign his petition. Take a look at http://www.anthonysabilities.com/mdacamp
Take care.
Beverly
IWelcome to PPMD! I see you joined the Florida Families group! I've been looking for some families in my area. We are in St. Augustine. My little guy was diagnosed in May of this year with DMD. He just turned 3.