[ Post a Response | 22q Deletion Interest Board ]
Posted by Deb Chase --Previous Message--
on 5/19/2007, 12:42 am, in reply to "Re: experiences wanted"
4.169.140.165
My son was just diagnosed in 2006 with Velo-cardio-facial-syndrome and was diagnosed last month with Charcot-Marie-Toothe. He's 28 years old. He has had many medical interventions including heart surgery, stomach surgery, eye muscle surgery, hernia surgery, 3 cardiac catheterizations, hospitalizations for cogestive heart failure prior to the heart surgery, hospitalizations and extensive testing for GI reflux which he was diagnosed with along with projectile vomiting(that was pleasant). My son had a poor suck reflex, difficulty chewing and swallowing, and didn't put his hands out to protect or catch himself when he fell.
He has struggled with learning disabilities, anxiety, and depression.
I have a son who has Down Syndrome, as well, who has cognitive challenges but is healthy as a horse.
:
: --Previous Message--
: 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!
:
: Megan Jones
:
: --Previous Message--
:
: --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.
:
:
:
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