Latest Activity: May 16, 2018
Started by Archana Maringanti. Last reply by Jay Griffin Apr 6, 2016.
Started by Archana Maringanti. Last reply by Archana Maringanti Mar 29, 2016.
Started by Corinne King Mar 5, 2015.
hello everyone - haven't been on in some time... need help w/ potty training an almost 5 yr old - YIKES. the Drs say DMD should not be the cause of his slow potty training... am I crazed? Levi just doesn't want to cooperate. Have any of you had boys not trained early??? help
Hi Sharon, glad you found this place. Definitely get signed up with DuchenneConnect. I've been trying to keep an eye on trials around here, and from what I've seen, most require that the boys be on steroids for about a year. We're in a much smaller center, south of Regina, Saskatchewan and there's not much close by. The one going on now is out of Calgary, but from my understanding would require weekly visits to the clinic there, making it pretty much impossible for us to participate. Hayden (5) has been on Deflazacort for almost a year now. Our younger boy Cameron (2) will likely start in a year or so, when we feel he's ready to swallow a pill.
Another group my wife and I are involved with is Jesse's Journey. I see by your page that you're actually very close to the founder, John Davidson. He's in London, Ontario. http://jessesjourney.com. They hold an annual fund raiser. If you have any questions about Jesse's Journey, feel free to contact me, or them directly. They have a great staff there, and we stay in pretty close contact. I'm sure John would love to meet you and your family. He came out here last year to see us. We're planning our second annual run/walk to raise funds for Jesse's Journey.
If there's anything we can do to help, just let us know.
I found this website through a friend. My two sons 2 and 4 have been diagnosed with dmd. It is really hard and finding support in this area is hard. Just have a question,If i would like to participate in any of these trials go on how would I go about doing that? Last year has been really hard. Just trying to connect with people going through the same thing.
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