I read your blog about Jon and becoming an Eagle Scout and college next year. Wow, great accomplishments. My son, Anthony, is also starting college next year and we are in the process of figuring out which college to select. Have you had any luck with either college funding or personal aide funding while in college? Anthony will most likely commute to college too (although he would love to stay in a dorm like everyone else). He is deciding on Computer Science, Software Engineer, or Journalism. Take care.
Christine - Thank you for all the wonderful information...I was noticing that you give your son vitamin c, B 12, and Juven. I looked also looked up Juven, I think I'm going to try these supplements with my son. Once again thank you..If you ever want to chat privately my email is email@example.com.
Christine - Thank you so much for getting back to me. I might sound funny but I'm not sure what a stop codon mutation means. Is he missing a particular exon or several and if so which one or ones is he missing? I'm also curious to know which supplements he is on. Once again thank you....
Hi Christine, my name is Lisa Kelly and I have a 7yr old son with Duchennes. I was noticing on your page that your son is 15 and still mobile. Is there anything different that you did? Just curious what is his deletion? I don't know if this is the right place to put this, I am just learning how to get around on this site, or I am trying too.
I am looking for some help to find a family affected by DMD in the Albany area. A friend of mine's father is cycling with a couple of other seniors along the Erie Canal in honor of my 7 year old son, Calvin and to raise money for DMD. They started their Ride the Canal for Cal" in Buffalo on the 10th and should finish up in Albany around the 19/20th. I thought it would be great if there was a local family or 2 who could go out and cheer them on and give them a handshake for what they are doing for our boys. Please let me know if there is anyone in your NY group that might be interested in doing this. Thank you!
hi christine, glad your son is going to camp, austin and max got into session 5, i was late with my application, so we were lucky they got in... austin is looking forward to it, max is nervous because this year he wil be in a cabin without austin, last year they were together. im insisting he go, for two reasons, first he will have a great time, he loved it last year. and second, selfishly i need a break, to focus on my husband and baby a little, so much of my time is devoted to the boys because of duchenne, i need time to focus on my healthy little guy
( and maybe some time for me as well...) i dont feel guilty with them at camp, they are well taken care of there.
You e-mailed me asking if I new another family in Orchard Park. I was wondering if you could give me their name again? I don't think I know them, but will try my best to contact them.
You sent an email to me and asked if I knew a family that you believe lives in Orchard Park. I was just wondering if you could tell me their name again? Good luck at the conference.
hi there, thanks for your comment, what seeion will your son be in this summer? we'll be there session 5. your name is very familiar, i think we've met at a conference, my maiden name is jenn zoller...
I have a quick question about Deflazacort. Dr. Wong just gave us the script for Ben. Is Calcort the same thing? I think I can get Calcort in Canada. I was looking for a less expensive way to acquire it than from England. Any ideas?
I am sure gonna miss seeing your boys in Utah this week. We pushed Jack's biopsy back to next week and it turned out to be a great decision, since we both had a nasty stomach virus this week. I hope Jonathan is still doing better taking the medication! Take care and say hello to the family for me!