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Florida Families

Families from Florida that are affected by DMD/BMD

Members: 41
Latest Activity: Dec 12, 2017

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Comment by Heidi Kruger on February 20, 2009 at 3:24pm
Hi my name is Heidi and my son Josh is 12. We live in Valrico FL.
Comment by Windy Jackerson on February 20, 2009 at 3:19pm
Hi. My name is Windy and my son son Skyler was diagnosed this past September with Duchenne, he will be 2 March 7. I am so happy I found this site and can talk and relate to parents that are going through the same as myself and my husband. This is really new to us and we are trying to cope and understand. I know the pain will never go away.
Comment by Nicole Chiaramonte on February 19, 2009 at 9:29am
I have not been on in while. Everything is a lot different. My son is 5 years old and has duchenne. We found out when he was 3 almost 4.
Comment by Terry Wilkerson on December 10, 2008 at 2:53pm
We live in Clermont, Fl. The child that has Duchennes is Willie age 8. He was diagnosed at age 3. The Shriners hospital has been a blessing for our family. Willie thinks he is the ambassador for Shriners. He collects soda tabs to take for every visit. He manages to take in about 50 pounds each visit. Pay it forward. His neurologist at Shriners is Dr. Fernandez. (what a good man).
Willie is currently in the clinical trial for PTC 124 phase 2B. He goes to Pensacola every 3 weeks. After the first of the year it will be every six weeks and he has his last muscle biopsy in April for the trial. The has been many downs and a few ups during the trial.
Comment by Danielle L Shoupe on November 28, 2008 at 8:18pm
We live in Tallahassee FL I'm a single mom my son Christian is 9. He will be 10 on Dec. 13th and has DMD. We are in tampa every 6 months at the shriners hospital.
Comment by Sheila & Dyllan Tanner on November 20, 2008 at 8:21pm
Hi, we live in Riverview near Tampa - Dyllan is 10 with dmd, he has an older brother Jeremy who is 13 he does not have dmd and dad Kevin.
Comment by Shannon on October 22, 2008 at 8:50pm
My son Shawn is 10. We live in Alachua, FL. I haven't tried to access the message board in a while - I love the improvements. :)
Comment by Dee on September 3, 2008 at 10:10am
My son, Tim, now 19 y/o and attending UF; we are currently living in Gainesville, FL and loving it.

You can read about our College life at: http://collegemomscafe.blogspot.com/

I think this is so awesome how much PPMD has stepped up the plate for their members and clients! Awesome!
Comment by dacas01 on August 17, 2008 at 12:24pm
My wife Angie and myself (Jose) have three kids: Andrew, soon to be 19, Alexandria 13 and our angel Daniel. He is 10 and diagnosed with DMD at age 5. We live in South Florida exactly at Pembroke Pines. Daniel has the Non-sence mutation and we were one of the "lucky" ones to participate in the PTC124 trial phase 2a about 2 years ago. Very soon Daniel will start taking PTC124 again, this time for a period of at least 2 years. We are very excited and hopeful he will get better or at least his process will slow down or stop. God bless, the Castro Gang
Comment by Jennifer Collier on August 15, 2008 at 8:15pm
We're from St. Augustine. We just moved from North Carolina. We LOVE it!!!
 

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