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MarcosDad
  • Male
  • Binghamton, New York
  • United States
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MarcosDad's Discussions

Used McLaren Masters Special Needs Stroller

Started this discussion. Last reply by Lynn Lenox Sep 9, 2013. 12 Replies

Young teenager with Duchenne passed away...

Started this discussion. Last reply by irishgirl Sep 6, 2009. 28 Replies

Abigail Alliance - ACCESS Act(S.3046 H.R.6270)

Started this discussion. Last reply by MarcosDad Dec 5, 2008. 1 Reply

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MarcosDad Page

Profile Information

About me:
I'm a Systems Engineer at BAE Systems.
About my family:
I have two beautiful kids, Gabriella and Marco. Marco was diagnosed with an MD (Duchenne) in 2006. We were told last year that Marco most likely does not have DMD but another MD. We are currently running tests to find out which one it is. My wife is Laura.
Name(s) of child(ren)/individual(s) with Duchenne:
Marco DiRosa
Age(s) of child(ren)/individual(s) with Duchenne:
7-12
City:
Binghamton, NY

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MarcosDad's Blog

When families and friends become more of a burden...

Posted on April 19, 2009 at 11:30pm 5 Comments

I don't know if it is me or just a fact that life is full of whiners. People, especially family members are so involved with their problems and issues and make the HUGE mistake of whining to me about it that I have to swallow my disgust and carry on with compassion. It is getting much worse to swallow probably because eventually most people go back to their normal and begin to whine again about their problems. The thing is I don't ever whine (except now on this board) since my son's diagnosis.… Continue

Frustrated and upset!

Posted on October 18, 2008 at 9:51am 9 Comments

I apologize for this vent by I must as you are all aware of the healing properties of venting...



My son has been diagnosed with DMD in March 2006. Then un-diagnosed early this year. We have no diagnoses but yet he has symptoms. They want to do another muscle biopsy but I resist. I can't let my boy go through another biopsy when there are so many other non-intrusive ways in finding it. What can they see now that they didn't see in 2006? We have all the lab results studying the muscle… Continue

Organ donors are in much need...

Posted on July 13, 2008 at 3:30pm 3 Comments

I heard a radio talk show with Larry Hagman as a guest. They were talking about organ donors and how much in need they are. Larry made a statement about why wouldn't people donate their organs after they are gone, they are done using them after all so why not save lives with them. Organ transplantation has become a major "cure" for many illnesses that have no cure and because of that there is a much bigger demand. But yet people still are weary to sign away their organs once they are gone.… Continue

Pool Nightmare!

Posted on June 19, 2008 at 4:00pm 9 Comments

I have to share this story.

We wanted to get a pool this year for Marco since he likes to swim. So we decided to get one of those metal pole pools that the liner hangs off of. We ended up buying an 18 foot round pool from Toys-R-Us. I had to level the ground in the back yard so I started to dig, and dig and dig. Called my father and we then continued to dig again. Finally I made a phone call to my neighbor who has a very large Blue Holland front loader. He was at work so he called his… Continue

Comment Wall (6 comments)

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At 9:33am on January 13, 2009, Kristi Koop said…
You hit the nail on the head! Thanks so much!
At 5:12pm on January 12, 2009, Kristi Koop said…
MarcosDad,
I am a member of the other DMD website that has alot of good information. However, I forget the website name and can not find it. Alot of people who were conversing on this forum went there. I know that Boz is very active on this board also. If you have any idea of which board I am speaking of would you please email the address?
At 11:18pm on January 8, 2009, Paul Cliff said…
Franco,

I see you've been active on the boards again. I hope that you're getting some clarity about what you're son is facing. This is hard enough knowing what's in store; I can't imagine still not knowing after all this time.
At 8:53pm on December 25, 2008, Julie Garcia said…
Happy safe, healthy holidays to all!

Julie
At 4:37pm on August 1, 2008, Joshua's mom said…
I just wanted to thank you for guiding me over here. I was wondering where everyone had gone! Thank you again for noticing I hadn't made my way here yet too.

Take Care,
Naomi
At 8:17pm on July 20, 2008, Tina said…
for the record..... i'm an organ donor. :)
 
 
 

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