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tracie
  • Female
  • florida
  • United States
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Tracie's Friends

  • Chris's Mom..Chris Wade McClusky
  • Nicole Chiaramonte
  • DanielsDad
  • Mandy
  • Tanya Fleming
  • Susan Nantais
  • Keith Van Houten
 

tracie's Page

Latest Activity

tracie replied to Keith & Jill VE's discussion Emflaza (aka deflazacort) Approvals
"My son was approved right away by Medicare. We used to pay less than $200 for a 90 day supply of Deflazacort we purchased from Masters Pharmaceuticals in the UK. Now...we personally pay $0/month for Emflaza...but my son's Medicare Rx insurance…"
Oct 21

Profile Information

About my family:
My husband Phil and I have 3 daughters,1 son, and 4 grandchildren. Christopher is our youngest, is 22 years old, and has DMD.
Name(s) of child(ren)/individual(s) with Duchenne:
Christopher
Age(s) of child(ren)/individual(s) with Duchenne:
19 or older
City:
florida

Comment Wall (6 comments)

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At 6:42pm on May 23, 2010, Leslie Guzman said…
Hi Tracie - Problem solved. thx!
At 12:34am on May 23, 2010, Leslie Guzman said…
Hi Tracie,

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 6:37pm on April 12, 2009, Susan Nantais said…
Hi Tracie,
Glad to hear from you. I often think of you and Christopher.

We are all doing well. Charlotte is beautiful with the change in seasons. Bob found a better job here and is doing fairly well. The younger boys like the snow that we get sometimes and are adjusted pretty good.

Ryan is a junior this year and is going to graduate early next year in Jan. Then he is going to go to the community college for a couple years and then plans to transfer to UNC Charlotte. He is not quite sure what he wants to do but Voc Rehab is helping with that. He just had bilateral tendon lengthening done last week on his legs. So he is going to be in casts for 6 weeks. He wasn't too bad but the doctor wanted to do it before his feet started to turn in. A 15 min. procedure with no problems.Thank the Lord. Other than this Ryan is doing pretty good. Weakness in his arms I have notice the most getting worse.

Glad to hear Christopher went back to school. I am sure it is an adjustment for the boys(young men)!

My email is still the same as in Florida. Take care and tell Chris we said Hi.
Sue
At 9:54am on April 9, 2009, Nicole Chiaramonte said…
Hi Tracie,
I live in Hernando County. When my son was first dignosed almost 2 years ago I talked to you. Back in January I had Daniel at the MDA at St.Joseph and they gave me some paper work on Christophers Community. Which I had already talk to you and research the web site when Daniel was first dignosed but it was nice to see them handing things out. I thought about submiting the application form that I received from them.
At 8:46pm on February 21, 2009, Tanya Fleming said…
Tracie
I understand everything you are saying. I feel the way you do too. We have to much guilt to deal with in my opinion.
At 10:21am on August 25, 2008, Kari said…
Welcome Tracie to PPMD Community.
 
 
 

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