Chromosome Disorder Outreach (CDO) YouTube Video

Amy - posted on 04/30/2010

Could I please get information as to how to join this outreach group to hopefully find out more information about my son? His chromosome disorder is 16 p13.11. Awesome video....

Pat - posted on 03/11/2010

Hi my name is pat and I have a 41 y.o. Down syndrome living at home with us. His name is Franky. He is able to do much of what other "normal"people can do. We are lucky that way. However, just like all of us he has his issues. I always wasn't so accepting either. He has brought me down a very rocky road, and I don't mean ice cream. ha. ttl. pat

Deonette - posted on 12/07/2009

whow, how great to know there is such an outreach- can you reach South Africa though? Well, you just did. My daughter is now 6 years old and still under the convenient " Global developmental delay" umbrella. Phisically, mentally,hearing, speach and sight impaired...I made peace with the "mystery" but still has a wonderfull well child ( girl) of 8 who will need answers one day when she wants to have children. The doctors suspect a syndrome but financially we can not afford to just randomly start testing-a lot of the tests -we were told -will have to be done overseas.

Velvet - posted on 10/06/2009

Sending hugs to you Belinda... It is so hard to love and lose the child we are given; like you I feel enormously blessed. We had Samantha with us for 13-1/2 years and she was my girlie, my gift.

Velvet

Administrator for Tetrasomy 18p Canada

http://www.tetrasomy18p.ca/

"Samantha's Syndrome"

BELINDA - posted on 10/05/2009

My heart goes out to all of the parents that have a child with a Chromosome Disorder, our son daniel was born with Trisomy 13 Syndrome, an extra chromosome on the thirteenth line, unfortunatley you do not get anything extra for having an extra chromosome. Daniel was diagnosed at 6 hours old but te doctors were not sure until after a few days of constant tests. Daniel was blind & deaf, he had six digits on each hand, extended heals, cleft lip, his heart wa all perforated, his stomach, heart, liver and kidneys were all misplaced. He had no scull on the crown of his head. Daniel passed away in my arms after suffering seizures for over 24 hours. We were truly blessed to have had the chance to get to know him and love him and now feel stronger for having that pleasure of being his Mum. We only have one photo of Daniel and it stands in pride of place in our family room.(I had taken nearly 72 photos of which all of them were damaged by light getting into my camera) Pleae do not feel that you are being punished when you ae blessed with a child with disabilities as you should feel special that you have been chosen to love and care for a special child and thrive with the challenge.

Elaine - posted on 09/23/2009

So many beautiful people in your video....does your heart good to see their smiling faces xx

Vanessa - posted on 08/04/2009

If i can help please let me koow. :) God Bless theses little ones.

Tracy - posted on 07/28/2009

i know someone who does makwishfoundation

Velvet - posted on 07/26/2009

: )

Michelle - posted on 07/18/2009

That was a very nice video... my son is getting a ginetics test done in August so we know which one he has or doesn't have. Right now we think it my be the down syndrome kind. It is so nice to see this video to know that there is others out there with a similar story:) THANK YOU

Cass - posted on 07/17/2009

That video is excellent. My son has PDD-nos some of his freinds at school have chromosome disorders. They are all absolutely beautiful children.

Amy - posted on 07/16/2009

My daughter was diagnosed with Asperger's about a year and a half ago. We always knew that there was a problem, and had t take our school district to court twice to get her the help that she needed in the classroom.....we won on both trips to court. It's very frustrating, and to try to explain to other children to be patient with her. Sometimes it breaks my heart!

Samantha - posted on 07/14/2009

Quoting Velvet:

Quoting Jessica:

love the videio, I hate the rare diorders I have a son who has senserory disorder(under the atiusim branch) and adhd and he was not dianoticed till he was 7 your'ss is much harder

: )  I also have a son who is "spectrumy"; described as "Aspergers-like" in development.  Sometimes invisible disorders are just as difficult for children, aren't they!

 

What is really so important to convey to those who may not have reached our understanding that children are primarily children - with or without a disorder/syndrome. Once people get past appearances, they then realize that there is so much more importance to each life. I think that knowledge comes with time, exposure, and understanding. Our children have tremendous gifts to give and lessons to teach....

I agree.  I am a special education teacher and teach level III children with disorders such as those mentioned.  Each child is trually amazing, disorder or not. We as adults need to look at all the positives and strengths those children have and stop focussing on the negatives and disadvantages.  these children have hopes and dreams of their own.  It's our job to help them meet and succed them.

Velvet - posted on 05/20/2009

Quoting Paula:

HI are there any moms...whose babies have been linked to chromosomal disorders...but the docters have yet to find out exactly which one? My daughter lived 27 days....and they know it is some kind of disorder....but to this day we don't know which. any advice on hope to cope?

Dear Paula,

There is a support group that I recently learned of called SWAN (Syndromes without a Name) that may be of use to you in sorting out some questions and feelings. Here is the link:

http://www.undiagnosed-usa.org/

God Bless,

Velvet

Mom of Samantha ^j^ Tetrasomy 18p

http://www.tetrasomy18p.ca/

(who appears in the CDO video 2-1/2 minutes in!)  : )

Paula - posted on 04/28/2009

HI are there any moms...whose babies have been linked to chromosomal disorders...but the docters have yet to find out exactly which one? My daughter lived 27 days....and they know it is some kind of disorder....but to this day we don't know which. any advice on hope to cope?

Jessica - posted on 04/21/2009

you are right i think really if people look past all that's" wrong" then they do relize that they teach use much more about life then we do even if they don't do it normally i take the bad days for the good ones too come

Velvet - posted on 04/21/2009

Quoting Jessica:

love the videio, I hate the rare diorders I have a son who has senserory disorder(under the atiusim branch) and adhd and he was not dianoticed till he was 7 your'ss is much harder

: )  I also have a son who is "spectrumy"; described as "Aspergers-like" in development.  Sometimes invisible disorders are just as difficult for children, aren't they!

What is really so important to convey to those who may not have reached our understanding that children are primarily children - with or without a disorder/syndrome. Once people get past appearances, they then realize that there is so much more importance to each life. I think that knowledge comes with time, exposure, and understanding. Our children have tremendous gifts to give and lessons to teach....

Tracy - posted on 04/19/2009

i have 2 boys with chromosome disorders i love them to bits some times its hard but they are worth it the video was lovely from tracy xx

Renee - posted on 03/13/2009

I have a son with Trysomy 21 and although he's delayed........he's more alike other kids than he is different! 

Joanna - posted on 03/12/2009

Such a beautiful and amazing video, thank you for sharing. I really believe that as moms we need to ALL make sure to be inclusive of every mother's child and appreciate that all children are beautiful.

Jessica - posted on 03/11/2009

love the videio, I hate the rare diorders I have a son who has senserory disorder(under the atiusim branch) and adhd and he was not dianoticed till he was 7 your'ss is much harder

Kelly - posted on 02/22/2009

What an awesome video!!!! Looking at those faces it is obvious God does not make mistakes regardless of what other people feel.

Velvet - posted on 02/16/2009

: )

Mary - posted on 02/16/2009

That was a lovely video!  I have a child with CP and know friends who have children with chromosome disorders.  I will send them to you.

Thanks again.

Mary