[ Post a Response | 22q Deletion Interest Board ]
Posted by Megan on 12/11/2006, 10:35 pm, in reply to "Re: experiences wanted" --Previous Message-- Megan Jones : --Previous Message--
74.99.191.154
: Dear Folks, I have a 22 month year old son and I just found out aftr he was born two years ago that he had this 22Qll deletion. It was a relief because I had also found out at 28 when I had him that I also had the same genetic disorder. I had trouble when i was a teenager getting into trouble feeling depressed and that i felt like there was no hope for me in this life. Know I have a beautiful son that I was blessed with he does have this disorder as well. I don't look at it as a negative thing but a learning curve in my life and in my son life's. Yes, there will be many ups & Down's and good time and in bad but no matter what it is important not to give up on your children regradless of what they have. I had also lost a still born baby when i was 21 and I was 7 & half months pergant it was so trageic to have lost the baby and i had always wondering why! Well, I'm sure that baby i had lost had serval problems that i didn't know about. I didn't know at the time that I had 22Q11deletion at the time. I thank God that my son know his okay! yes there will be challenge's but I wil help him through it. Oh bye the way he always a kidney defect. He's heart is okay! Just remember that yes this 22Q11deletion is frustating to deal with but just keep in mind they are your kids and to just keep on going!! Merry Christmas and Happy New Year! My e-mail is jonescampmuskoka2003@yahoo.ca I am very open so feel free to e-mail me!
:
: --Previous Message--
: My third child was diagonosed with
: 22q11 deletion (DiGeorges). I knew
: she may have had a genetic disorder
: prior to birth since she had several
: heart defects.
:
: I have a 4 year old daughter and 2
: 1/2 year old son as well (neither
: have the disorder), and wondering if
: anyone else out there had troubles
: with pumping breast milk and dealing
: with insurance companies supplying
: materials for an NG tube (which she
: came home with from Johns Hopkins).
:
: We are awaiting for her next surgery
: but just wondering if anyone else
: has had older kids with a younger
: siblings.
:
: We have a 14 yr old son, a 11 yr old
: daughter, both typical. Our third
: child (a son) was born with 22q11,
: he's now 8. Would love to talk with
: someone in a similar position. Feel
: free to email me
:
: Aloha....We just found out after 15
: years that our oldest child (15) has
: VCFS. We also have 4 other children
: that was not affected. I would love
: to have someone who is dealing with
: this email me. Maybe I could be of
: some help also since my daughter is
: 15.
:
Message Thread:
« Back to thread