Comment Wall (14 comments)

You need to be a member of PPMD Community to add comments!

Join PPMD Community

At 1:27pm on February 6, 2013, Michele Perry said…

Christina:  We are using an at home teacher right now for our son Chris.  He did not have surgery, but fractured his femur.  We started out with emailing homework, back and forth with some of his teachers (not all were on board with this system), then got home schooling twice a week with an actual teacher.  This seems to work better since the teacher corrects the work right away - I do not have to email back and forth.  The resource teacher actually set this up.  Hope this helps a bit.  Michele  PS  Nice to "meet" you.

At 11:56am on September 27, 2011, cheryl cliff said…
Hi Christina,
somewhere I read you asked where to get deflazacort from. we get ours from It's located in the UK but they mail it to you after they receive the rx from your doc. They have an 800 number for US patients but I usually contact them by email. Ask for Julie, she can assist you. Also, you won't want to get too close to running out of deflaz before your next re-order. It can take awhile to ship AND orders sometimes get backlogged just before Christmas since the mail is bogged down. I usually order just before thanksgiving so as not to run out.
At 6:43pm on February 16, 2009, Gregory said…
Please join our San Francisco Bay Area Families group.

At 10:40pm on August 7, 2008, Polly Sundeen said…
Hi Christina - did you have the IEP yet? How did it go?
At 10:11am on July 15, 2008, Polly Sundeen said…
Hi Christina,
We live in a different county - but have been going through IEP's for Cole since he was 3 - I would be glad to try and answer any questions you have. It's so hectic once I get home - I know it sounds horrible but I can actually talk easier when I am at work. My work number is: 949-451-5216 and my work email is: I'll be out of the office until about 11 today - but then there the rest of the afternoon until about 5:30.
At 10:00am on July 9, 2008, Jenny Garofalo said…
Hi Christina,
thanks for watching the video. yes the bike was specially made for Danny and just since starting the Juven has he been able to ride a trike and couple feet of his brothers 2 wheeler with training wheels. We got the bike at the abilities expo in our state by a company named triaid out of maryland. worth every single penny to see that smile while he rides.
At 8:10pm on July 2, 2008, cheryl cliff said…
Hi Christina
It was great meeting you and your family recently. I just wanted to remind you to contact MDA and find out what they have in storage at their loaner closed...your brother might be happy with a moterized chair.

Sorry I didn't have any straws on hand when you guys were here. Guess what I have a lot of now...

At 6:29pm on June 24, 2008, cheryl cliff said…
Please let nick know he won't be the only shy one here! And, he doesn't have to swim if he doesn't want to there might be other stuff he likes or we will just enjoy visiting with him.

At 2:56pm on June 23, 2008, MicahsDaddy said…
["On Monday I plan to talk to his doctor and find out. I also took a look at the paper work when he was diagnosed. Under diagnosed it just said DMD."]

Yes, it is a good idea to find out what mutation he has. His doctor should have it in the paperwork he received from the lab that tested your sons blood.

Once you know the mutation, if a trial comes out specific to your sons, then you can decide whether or not to get your son involved.

And, you'll also know that the researchers are working on something that benefits you. It helps your hope.
At 12:17pm on June 22, 2008, cheryl cliff said…
Hi Christina

Can Nick swim? Does he require assistance getting in and out of the pool or jacuzzi? Most of our activities will be in the back yard but there is stuff he can have fun with inside if he prefers. Is he shy? So is Alexander, my son. Let me know what you think will make Nick more comfortable while he is here...hopefully he will have a little fun.

At 3:07am on June 22, 2008, Polly Sundeen said…
Hi Christina,
I'm sorry about your son's diagnosis. My son, Cole, is almost 9 and was diagnosed just over 6 years ago. We live in Tustin - which is just North of Irvine off of the 5 fwy. Isn't Santa Fe Springs near La Mirada? My husband lived there until he was in 6th grade and then his family moved out to Riverside. We are hoping to make it to Cheryl's house on the 29th - I hope you can make it out there too.
Take care,
At 12:56pm on June 21, 2008, Lee Ann Faeth said…
Hi Christina,

I'm sorry that you had to find us, but you will find the most wonderful, resourceful group of parents here that together are doing everything we can to fight the battle against Duchenne. I really hope you can make it to the get together next weekend.

My son Avery turned 4 in April and was diagnosed a couple of months before his 3rd birthday last year. Santa Fe Springs isn't far from us at all. You will also find a few other families that live even closer to you. Your son is cutie pie!
At 6:36pm on June 20, 2008, cheryl cliff said…

can you send me your private e-mail address. that way I can give you information on where we are and do you need directions? it is the 29th at 1:00. and can you tell me how many will be coming in your family? that way I know how much food to have. I am really looking forward to this get together, so is my son Alexander!

bye for now
At 10:08am on June 20, 2008, cheryl cliff said…
Hi Christina,

Did you know we are hosting a DMD get together June 29th, Sunday at my house in Riverside? You should come and meet others, so far about 5 families will be there and I think there are a couple of 5ish boys. Does your son swim? There will be swimming for the kids (or anyone else) but please bring arm floaties if he doesn't swim well right now...

I would love to meet you guys. My son, Alexander is 9.5 DMD and we have another Max who is 8.5. We are really excited to meet some of the boys in SoCal so I hope you can take the drive out here. Let me know if you can come and I will send you the info on where we are and all. Also, please consider joining the Cal group in the groups section here. We need to stay connected here in Cal!!

Your son is adorable!

Need help using this community site? Visit Ning's Help Page.



© 2023   Created by PPMD.   Powered by

Badges  |  Report an Issue  |  Privacy Policy  |  Terms of Service