"I thank you for this. I go through this thought process constantly. We got the diagnosis, start to figure it out and then kindergarten started and I am trying to deal with all the cognitive issues and helping learn to cope with this and…"
"My son, who is 4 almost 5, has duplications on exons 56-63. He is still doing very good with running and other things which I suppose is expected at this age. I always wonder how well other kids walk around this age…"
"Did your doctor prescribe anything to protect your son's stomach while he is taking steriods everyday? My son takes Prednisolone everyday and ranitidine, which is a proton pump inhibitor that is supposed to protect his stomach while…"
"So excited. Found out that Liam has gotten appointments to go to Cinci Sept 20-Sept 22. So glad to be going somewhere that KNOWS about duchenne. Hopefully Liam starts getting the care he really needs."
"Terry and Tammy-
My son has is 4 and although like you said he lacks at running and jumping the same as other kids he is very athletic and does a very good job. He can actually jump with both feet off the ground and runs a lot…"
"Hello I usually don't talk much here as absorb what everyone is saying and take my support that way but... Liam is 4 and has OCD tendencies. We haven't looked to get anything done because it is not that bad. His dad gets…"
I am almost done with RN school, and working part time at a longterm healthcare facility.
About my family:
It is now the three of us trying to help each get through. We are doing relatively well and adjusting to our new lives. We do as much as we can together, and have as much as fun as we can by watching movies, going to the park, and hanging out together and with friends.
Name(s) of child(ren)/individual(s) with Duchenne: