Comments on: 22q11 Deletion Syndrome

By: Blog Day 2008–Reading, Learning, Hoping, Blogging, Being

Blog Day 2008–Reading, Learning, Hoping, Blogging, Being — Sat, 05 Sep 2009 21:36:20 +0000

[...] heart defect (which later turned out to be the result of a chromosomal abnormality called 22q11 Deletion Syndrome or DiGeorge Syndrome), Jon Boyd set up a blog for them. Via the web, their friends and family [...]

By: Brown

Brown — Sat, 21 Jul 2007 08:49:04 +0000

Brown…

No! You shouldn’t do that!...

By: fvd teens oax

fvd teens oax — Sun, 15 Apr 2007 02:29:34 +0000

Shall I take your coat? asked Clare
p.s rsfjfwydlk
p.p.s edyg8r7fh987erhfs8v

By: Trish

Trish — Wed, 14 Mar 2007 21:22:19 +0000

For those interested in more information about 22q11, a.k.a. DiGeorge here are some excellent websites from the experts on the deletion:
http://www.chop.edu/consumer/jsp/division/generic.jsp?id=74634
http://www.vcfsef.org

Trish
Mom to a 9yo w/22q11

By: Lisa D

Lisa D — Tue, 27 Feb 2007 16:44:03 +0000

I am praying for a miracle. We send our love to all of you and support,

By: Nazan Yar

Nazan Yar — Tue, 27 Feb 2007 13:59:59 +0000

I don’t know what to say. This support system is nothing short of miraculous.

I love you all and it pains me to be so far away.

By: Jacqueline DesIsles

Jacqueline DesIsles — Tue, 27 Feb 2007 13:49:59 +0000

My dear ones,
How my heart breaks for you today and longs to comfort you in some small way. And, yet, yet I remember our God. Who HE is. The same God who brought the two of you together, who brought Simon into your lives, who dreamt of Ramona and brought her to you….this is the same God who will NOT leave you!!!
I can not possibly know all that your heart is going through but I know our God and He will take this seemingly senseless tragedy adn HE will use it for good. Because that is WHO HE is.
I love you very much,
AJackie

By: Andrea

Andrea — Tue, 27 Feb 2007 04:46:15 +0000

Hi,
I found your site tonight and had to write. Three years ago as our son was recovering from open heart surgery we were devastated to learn that he has DiGeorge syndrome too. I’m sure the dr’s told you that it is a wide spectrum, but so far Drew is doing great. I just wanted to give you some hope that things may not be as bad as they seem. Please feel free to email me (a_himmelberger@hotmail.com) if you have any questions or would like to talk to someone who understands. We will keep Ramona in our prayers.

By: Leah

Leah — Tue, 27 Feb 2007 02:52:15 +0000

Hey guys,

I have been following Ramona’s story from our EC on iVillage… Our little one is a December Snowflake as well. I am so sorry to hear about your news, but know that I will continue to pray for all of you. I do know that miracles do still happen when we pray. May you find peace, comfort, and strength in the Lord at this time.

Leah

By: John, Sara and Boys

John, Sara and Boys — Tue, 27 Feb 2007 01:45:20 +0000

Andy and Jane,

Sara and I wish we could take on some of your pain as our own. We love you and your family and are praying for God’s healing power for Ramona.

Happy 3-months Ramona, we are proud of you!
– John, Sara, Connor, Sam and Jack