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Dee
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  • Gainesville, FL
  • United States
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Latest Activity

Najat Azar joined Dee's group
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Mom's Cafe

A group for Mom's who like to vent and talk about life with DMD kids
Oct 23

Profile Information

About me:
Welll...what about me?! (LOL) ...other than I am a happily single mom of 1- 20 y/o attended University of Florida. We live in Gainesville and enjoying the lifestyle up this way (comparing to where we use to live). I enjoy writing, scrapbooking, photography, music, and blogging. I enjoy making new friends...and I enjoy supporting PPMD whether it be financial or it be (emotional) moral support. They are a great bunch of people who sincerly care and I'm proud to be part of the PPMD family.
About my family:
I only have one son, Timothy. He has been the joy of my life and has a bit much more success in his college career. He is taking awesome classes and physically doing extremely well.

We too, want to END Duchenne.
Name(s) of child(ren)/individual(s) with Duchenne:
Timothy
Age(s) of child(ren)/individual(s) with Duchenne:
19 or older
City:
Gainesville, FL

Dee's Photos

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Mom's Blog

New blog (effective January 1, 2009)
A Mom's Journey

Dee's Blog

A New Journey

Posted on June 2, 2014 at 12:30pm 0 Comments

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…

Continue

Learning the Lessons of Life.

Posted on August 30, 2012 at 11:45am 0 Comments

Hello Everyone. 

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…

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The Will to live-part 1

Posted on August 30, 2010 at 6:24pm 0 Comments

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…

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Stop putting Things on Hold...& Just do it!!

Posted on November 10, 2009 at 6:30am 5 Comments

IF you are new here to the PPMD community, or even if you are not new to the community, you might noticed the set of photos that we as parents share of our boys.



Look at all those faces. They are smiling. They are innocent. These are the faces of our boys who has their mom and dads and grandparents, uncles and aunts, siblings and cousins that fight to end Duchene. They fight for their lives, because of a disease that robs them the ability to do tihngs for themselves. While many stay… Continue

Bipap /Neumothorax

Posted on July 26, 2009 at 5:30pm 3 Comments

I keep coming and going into the PPMD site...to learn new things and the challenges that we all face on a daily basis.



This last week has for sure been a challenge for Tim...actually this month. He has been in ICU 2x's this month now. Apparently his bipap setting was set to high for him and probably caused the neumothorax. They thought it would resolve the first time he was in here but instead it only got worse. By July 21, after spending 8 hours in the waiting room with chest pains… Continue

Comment Wall (10 comments)

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At 1:41am on May 23, 2010, Leslie Guzman said…
Hi Sandy,

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
At 12:32pm on January 25, 2010, Anita Bullers said…
Hello Dee,
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.
At 1:10am on August 18, 2009, Teresa Buchanan said…

At 7:42pm on May 2, 2009, Allison & Whalen Kuller said…
Hey Dee -

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
At 9:48pm on October 5, 2008, Susana Arroyo said…
Awesome!
I'm glad he is doing better
I will continue to keep him && you in my prayers.
At 5:25pm on October 5, 2008, Susana Arroyo said…
Hello Dee,
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????
At 4:36pm on September 14, 2008, Ally Bridwell said…
Hi Dee,

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)
At 9:30pm on September 13, 2008, Stefanie Killian said…
Hi! Hope all is going well for you and Tim. It sounds like you are both busy. We are gearing up for all of our fall fund raising (Sam's Day and the NY Marathon). Hopefully we will get to see you at the marathon in January.

Stefanie
At 10:46am on September 4, 2008, Beverly DeVergillo said…
Hi Dee,

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
At 10:19am on September 3, 2008, Jennifer Collier said…
Hi Dee,

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.
 
 
 

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