Hi thanks for getting back to me. I think my son Sam would be really shy to talk on the phone...he barely talks on the phone to his good friends! He is not on Facebook but he does have email....his email is samgseckler@gmail.com He said he would be interested in being buddies with someone in his situation. THANKS!!!!
Well, that was fast! I talked to Jacob this morning and he seems to be quite excited to be able to talk to someone his age in the same situation. Our phone # is 204-375-6678. If you have facebook they can chat there too.
Sam sounds like he has a lot in common with Jacob. Too bad we live so far apart! :) Being the same age, almost teenagers, does Sam even like talking about it? I know with Jacob, all he wants to do is yell his frustration and even swear! We are getting Jacob involved with a psychologist now before the teens hit and the anger doubles. I can talk to Jacob and see if he would like to be introduced to Sam. Does Sam want this as well? After I talk to him, I can e-mail you our phone # and e-mail address so they can talk back and forth. He is on facebook (under parental control). They can at least sit at the computer and chat. They can also re-read what they typed... maybe re think it too. As parents we are always looking for someone to talk to. As boys... it's hard for them to find anyone they can vent to without feeling "wimpy". I will get back to you as soon as I talk to him though. Thank you for contacting me in this regards. We sometimes have children without the disease who feel they get set on the back burner, that's not where they belong.
Hey! I've been trying to contact you to learn more about Charley's Fund. My son, Brandon has a deletion of 51 as well. I signed up on your mailing list, but don't know if I was successful. My name is Julie Hathaway and my son, Brandon, just turned 7 in July. I would love to talk with you. My email address is lynnlee@charter.net. God bless you!
Hi there. If you're interested I started a "Massachusetts Families" group a while back so we could all connect. Feel free to join us under the Groups tab!
Hi Tracy - Glad you joined... I met you in SF, CA during the Darius goes West viewing. Hope you are well. I am wearin my "I believe" t-shirt now. Thanks for everything!!
Comment Wall (8 comments)
You need to be a member of PPMD Community to add comments!
Join PPMD Community
Yes, It changed. Its now
ccgood@frontier.com
My son is 8 y/o with a deletion of exon 51. Is this also Charley's deletion?