I have been living in the US for over 8 years now. I was brought up in Peru where I was raised bilingually in Spanish and German. I have two boys, of whom the oldest one, 10 yrs. old is affected by DMD (duplication of exons 8-12). My 7-year-old is not affected. I would love to meet more parents with young children that are facing the daily challenges of this disorder.
About my family:
We are four in our family. Our extended families live in Peru and in Germany. My husband and I have been married for 12 years now and despite the sad news we got some years ago, we are hopeful and fight for life.
Name(s) of child(ren)/individual(s) with Duchenne:
Age(s) of child(ren)/individual(s) with Duchenne:
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Isabel, My grandson was diagnosed with duchenne 1 and 1/2 years ago. I live in Miami and would like to speak with you. I was in Washington DC with parentprojectonevoice Feb. 12-15. Now I am planning a fundraiser for duchenne research on April 29. I would like to get other families involoved who have children with duchenne. My grandson has duplication of exons 5-7. My numbers are 305-554-5744 and 789-382-5685. My son and his family live in Houston, Texas. (their 4 year old has duchenne) My son is involved with parent project md and very active with coach to cure. He and 20 others recently ran in the Houston Marathon to raise money for research for duchenne. I had a fundraiser last February and plan to do something annually to raise money for research and to build more awareness for duchenne.Hope to hear from you. We lived in Honduras and Venezuela also. My mother in law was Honduran and my father in law German. Harriet Meermann
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...
Muchisisimas gracias por la atencion!!
Here is my email and phone number: email@example.com or (513) 765-9416