I grew up in New Jersey and now live in the Detroit suburbs. I work as an engineer in the automotive industry. I have two sons, age 15 and 18.
We visit Cincinnati Children's Hospital for our primary MD related care. We also use the Pediatric Neuromuscular Clinic at the University of Michigan, and have been to the Children's Hospital of Michigan MDA clinic.
Name(s) of child(ren)/individual(s) with Duchenne:
Kyle, age 15. He has an in-frame exon 5 deletion with a DMD phenotype.
Age(s) of child(ren)/individual(s) with Duchenne:
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My name is Marharita. I am from Ukraine. I have a son with DMD. He is 10. I write lerttes to people from different country. I would like how do they live with this illness. My son have goes to school on the fourth grade . But ukrainians doctors haven`t known how help us. So, just know more and will have community. If will have a impossible so write me about you. My email email@example.com.
hi keith, you had mentioned in one of your emails to me couple of years ago that you were thinking of reducing deflazacort dosage for kyle. Did you do it and if so did you see any effects in terms of strength/dexa? we are thinking of doing the same primarily to see any +ve effect on dexa, but scared to try it. can you reply to firstname.lastname@example.org? thx..
Our Deflazacort shipment is being hold by FDA in the post office.We have ordered it with doctor letter even then did not go though custom.The letter from FDA states that drug you are importing are unapproved new drugs and /or can be purchased in the US.Anyone had the same experience,please share and help ?Thanks