North Carolina/South Carolina Families

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A group for families living in North and South Carolina

Members: 20
Latest Activity: Jan 16, 2016

Hi Everyone,
I hope this will be a place where NC and SC families can discuss useful information that will help our sons. Everything from clinic experiences to navigating the state system for getting help for our boys. And of course fun, accessible activities and places to visit.

Discussions

Dr. Wong

Started by Angie Doub. Last reply by Angie Doub Jan 7, 2011. 3 Replies 0 Favorites

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Comment by Kara on December 16, 2015 at 9:25pm: Thanks for that feedback, Kristen. I did see it before now, but never got a chance to hop back on and reply.

Jay, I am so glad you are here looking for support. This is a lot to take in. Message anytime.

Comment by Jay Griffin on December 16, 2015 at 12:53pm: My name is Jay and we just found out that our son has DMD. He is 6 yrs old. Its tough right now processing it all... I hope this message finds you all encouraged. We reside in Concord, NC area

Comment by Kristen McSwain on January 10, 2015 at 1:48am: Hi Kara! We live in Clayton, just east of Raleigh. My son Seth is 13 and would go to Duke as our local clinic, but instead Has seen Dr Wong since 2007. I like the treatment model there, because in one extended visit you see all of the Drs. It is intense for Seth, but the outcome is that all of the specialists are communicating together. Within a month after the visit you receive a written summary of the visit with a write up of all of the findings and copies of the test results. Maybe Duke does something similar now, but it didn't when we used to go. The down side is that because Cincinnati is not your local MDA area, funds are not available to supplement your insurance coverage, so you will pick up co-pays and deductibles, or potentially the entire bill if your insurance won't allow you to travel out of state to a provider.

Comment by Kara on January 9, 2015 at 10:40pm: I don't see any recent posts, but maybe you all are still out there! We live in High Point and our son Josiah sees Dr Smith at Duke. Does everyone else goto Cincinatti? Should we??!?

Comment by danielle on March 5, 2013 at 10:39am: are there any families in here form sc around beaufort or charleston

Comment by danielle on December 16, 2012 at 4:16pm: We are in beaufort sc. I am aware of a few families in sc that have dmd but i have yet to be in contact with them. if there is anyone that wants to talk just email me and i will get in touch. I am a stay at home and so far dmd has become my life i want to get more involved im just tryinh\g to figure out how.

Comment by Kim Innabi on June 27, 2011 at 11:05pm: Hi Everyone, we are going to be moving to Charlotte (Waxhaw) in August. We live in California right now and are excited to be moving to NC. My son with DMD is going to be 15 in Sept. I hope to meet some of you that live close by!!!

Comment by Jacobs Mommom on December 30, 2010 at 1:11pm: Mindy Cameron is looking for a family from NC that might be willing to do go on a local TV station and talk about Duchenne. If any one is willing please email me at donna@donnadoolittle.com and put Duchenne and TV in the subject line.

Comment by Julie Hathaway on November 10, 2009 at 10:50am: Hey! Give me a call, Grammy. My number is 864-254-9190. We live in Greenville, SC. I've met some wonderful families in your area. Would love to talk with you. My son, Brandon is 7 years old. We see Dr. Wong as well and will be heading up there in January. Would love to chat.

Comment by Pat Nivens on November 10, 2009 at 4:48am: I am Grammy to 8 year old Brady. He was diagnosed with DMD four years ago. We live in Kings Mountain, NC near Charlotte and 10 miles from SC. Have not found anyone in my area to talk to. Brady sees Dr Wong every 6 months at the Cincinnatti Childrens Hospital in Ohio.