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Rosalie Female Ronkonkoma, New York United States: Favorite

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About me:: I am a 40 year old mom of 2 boys 6year old Christopher has DMD and 2 year old Dominic. I am pediatric OT for school aged kids.

About my family:: I have been married for almost 8 years and he is the most amzaing man, and father. We are so blessed for the support of my family and the love. and the friends that are not friends but family.

Name(s) of child(ren)/individual(s) with Duchenne:: Christopher

Age(s) of child(ren)/individual(s) with Duchenne:: 4-6

City:: Ronkonkoma, New York

Christopher is our first child and like everyone else who's son was diagnosed it came as a complete shock and I still til this day don't believe it. He was diagnosed at 13 months, the diagnosis was discovered with blood work his gastro doctor ran. He is truely our angel and anyone that meets him is touched by his "Duchenne" smile.

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At 8:36am on August 4, 2011, Jessica Rownd said…: Hey saw your post we arrive in cincy on aug 24-27. Plan to go to aquarium on that friday and maybe childrens museum one day. Our appt is thurs. How old is your son. Wyatt is 5.

At 10:30am on October 22, 2008, Hunter's Hope said…: You're in Ronkonkoma...not far at all. We live in Ridge but the children attend school in Centereach. It would be nice for us NY families to build a support/play system for our boys (and an outlet for us Moms)

At 9:58pm on August 21, 2008, CVita said…: Hi Rosalie. I'm very sorry that it's taken me so long to respond back to you. My son's name is Andrew, and he turned 6 this past March, but he does not have DMD, he has Limb Girdle MD Type 2D. The reason I joined PPMD is because there is no real network for LGMD, to say nothing of my son's specific type of LGMD. Also, the alpha-sarcoglycan protein, which is affected in my son, is part of the Dystrophin-Glycoprotein (DGC) complex, so it is conceivable that some of the research for DMD could translate to LGMD 2D. I visited Dr. Mendell at Nationwide Children's hospital in Columbus Ohio this past April. He is the leading researcher on gene replacement therapy for both DMD (using the miniaturized Dystrophin gene) and LGMD 2D. He is very optimistic about this approach. I know the phase 1 DMD gene therapy trial happened some time ago, but I think they have to run it again if I'm not mistaken. The phase 1 for LGMD 2D is still recruiting now, but we decided to not put my son in this first trial, which Dr. Mendell thought was a good choice for several reasons.

At 10:23am on July 28, 2008, MaryEllen Sicoli said…: Hi Rosalie, Nice to meet you. My son Nicholas is 10 and diagnosed at age 4.5. I am available by email/phone if you would like to chat or have questions. I hope all of us "NY families" can some day get together.
Enjoy the day.
MaryEllen

At 9:29pm on June 24, 2008, Christine Piacentino said…: Hi Rosalie,

My son is 14 and was diagnosed in 1997. Please don't hesitate to contact me if you need anything. Glad you found PPMD, I hope that you find the information and support helpful.

At 11:18am on June 23, 2008, Alison Willis said…: Hi Rosalie...I have twin 6 yr old boys...welcome to PPMD. If you ever need anything, please don't hesitate to contact me! Take care.