I would LOVE to know more about how you guys are working with UCLA and what is coming. We go to Kevin Flanigan- who, until this fall, was at Univ of Utah. He's moving to Nationwide Childrens in Columbus so we will go there next. Alexander is doing ok. We've only known about his dx 2 years this week. He rides a scooter more and more these days, losing the ability to walk. We haul him up & down stairs piggy-back until we can get an elevator installed or move, haven't figured that out yet.
My husband, Paul, is from LA, went to SC where his dad was a prof of statistics. I'm from Riv, hate to admit that one but well, its true. You know Carrie, if there is any way we can help secure better care here in california, especially so cal, I would love that! Where are you in the process, what are the actual goals/plans and what can I do?
I can be reached: email@example.com or 951-780-3864
I have heard of your efforts for better care. California as you know is so desparate for dmd care as many states are. Please let me know what I can do to help in any way. I am not afraid to knock on doors and ask. I push so hard as my way of coping thru all of this. I believe things are changing but we have to keep pushing to make it happen now, in time for our children, this generation.....sorry, I can't help myself and go on about this.
Some day soon I hope to meet. I will let you know when I am down your way to stay a little longer than a day or so. I have made some trips to San Diego with a quick turn around. My husband has cousins in southern California as well. Both are artist and one who is an artist is a doctor as well.
I am sorry you are in this situation. I have heard a lot of good things about you and your husband and would love to some day meet.
I hope we can help bring about positive changes in California for our children. DC is the one place I push hard because it is the only thing I believe I can do to help make changes for our children. I was encouraged to do so by PPMD and Joel Woods.
My son is soon to be 17 years old and I am still looking for the best care in California.
Well, I wanted to drop a line and say if there is anything you know I can do in the Sacramento area to please let me know.
okay Carrie, for some reason it popped up on 'friend finder' that I may know you. Wierd, huh? Guess because we have that Duchenne/research thing going on. I'm amazed with the whole process and still learning the system.
Take care. We should call you soon with updates.... Delete Comment
Hi my name is Christina. I also have a son with DMD. My son Bryan is 5 years old. I was searching for other famillys who lived near by. My son and I live in Santa Fe Springs near Norwalk in Los Angeles County.
Thanks for your note and question. Let me first start by saying if you are looking for that information on this page you are not in the right spot. This is the community page which is one aspect of PPMD's website- really a souped up messageboard and community sharing area.
Where you need to go is to PPMD's main page www.parentprojectmd.org and then go to Caring for Him ( I htink it is the second tab of the six) When that opens up you will see various info on care issues... the thing you will probalby most want to read is the Standards of Care link ( I think it is the first link in red )
Now Carrie, when you sent me your message I did go and explore that area a bit and realized that we do have another article that I think might be useful to families so we are gogni to add that to the site and actually try to carve out a cardiac subnavigaiton. So thank you for asking your question... and let me know if you have others.
Hope you are well.