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Anyone else with a child with DS + DS in the family?


 
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4amMadonna
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Joined: 30 Jun 2010

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Location: UK, North-east

PostPosted: July 12 2010, 12:06 PM    Post subject:
Anyone else with a child with DS + DS in the family?
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Hello,
I'm new to downsyn.com but so grateful I have found you all!
This is a specific appeal: My husband grew up with a younger sister with DS+some autsitic spectrum disorders. She was born in 1970, if that sheds any light onto the help available then.
We now have our own baby boy with DS. Not diagnosed until 9 weeks, he's 10mths now.
We're going through what seems to be a common process, coming to terms with Jacob's diagnosis and health problems.
My husband's life has taken a strange turn - he grew up with a sister with DS and now has a son with DS, albeit in very different circumstances. We know there is no genetic link - just chance.
We were just wondering if anyone else out there has had this experience? If so, we'd love to be in touch,

Rachel x

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MiniMidgMom
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Location: near Nashville, Tennessee

PostPosted: July 12 2010, 1:38 PM    Post subject:
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Welcome Rachel! Congratulations!

We do in that I have a cousin with DS and a daughter with DS. But my aunt (cousin's mother) is my mom's half sister, they have the same dad but different moms. Our genetic counselor told us that there was no link between Rosie and Clara's DS because of the half sister thing. We had chromosomes tested for Clara and she is non-dysjunctional so that means it's random and not familial.

The major types of DS are non-dysjunctional (random), mosaic (not every cell affected) and translocation. In translocation, the parents can carry genetic material for DS and it can run in families. You and your DH might want to talk to a genetic counselor if you are planning on having more children. Even if you don't care, it would be good to know so you can be emotionally prepared and the pregnancy can be monitored since there is a high risk of miscarriage with DS pregnancies. Your OB can connect you with a genetic counselor. My perinatalogist had one on staff.

The basic chromosomal testing usually does not check enough cells to determine if a baby is Mosaic, it has to be specifically ordered. I don't know if the basic testing can determine translocation, but there are others on this forum that can answer that question.

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DanielsMommy
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PostPosted: July 12 2010, 2:47 PM    Post subject:
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Hello and Welcome. I have a little boy (5 years old) with Ds and my cousin has a daughter (almost 2) with Ds. I think it's cool to have a family member to share in the experience of raising a child with Ds. There is no genetic link for us (not that i know of at least).

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LinMac
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PostPosted: July 12 2010, 3:02 PM    Post subject:
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I have DS in my sibling family and also have DS in my inlaws family.

Let me explain.....
My sister and I have both had kids with DS, my sister had a daughter almost 9 and I have a son just turned six. Kelly was 2.5 years when Robert arrived.
Quote:
We know there is no genetic link - just chance.

Same with our kids....no genetic link....Just randon and both have T21.

My brother in law married to my other sister has a sister with DS. She was 47 last week and she lives with her parents. Her name is Olive.

My sister in law married to my brother has a brother who has DS. He is in his mid thirties, lives in shelter housing and holds down a full time job.
His name is Jim.

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mellysmom
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PostPosted: July 12 2010, 4:11 PM    Post subject:
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I know someone who has two sisters who each have a child with DS. Theirs, also, was not a heredity thing.

I have another friend , who has a daughter with ds. My friend also had a cousin with DS. No genetic link.

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Katrina
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PostPosted: July 12 2010, 5:49 PM    Post subject:
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My husbands brother has a daughter with DS',Charlie is 18 and my husbands first cousin has a son with DS.,Travis is 10 and we have Peyton who is 4. All of the kids have regular T21 . Hugs Katrina

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emlynsmom
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PostPosted: July 13 2010, 1:38 PM    Post subject:
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Brian's cousin has DS, and my cousin had a baby last year who had DS....all the random T21 kind!

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My girl Sam
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PostPosted: July 14 2010, 3:28 AM    Post subject:
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I had a second cousin who had DS

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teddyjoe
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PostPosted: July 18 2010, 7:49 PM    Post subject:
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Teddy's great aunt (on my husband's side) had DS.

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4amMadonna
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Location: UK, North-east

PostPosted: September 09 2010, 12:27 PM    Post subject:
thanks to everyone who has replied
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Thank you for all your responses.
I don't know what the incidence is of DS babies compared to non-DS babies - it's probably not so uncommon, but I think my husband feels like he's been 'hit twice', even though he is close to his sister and loves Jacob very much. On the one hand he feels he has grown up with a sister with DS + autistic spectrum disorders and is now faced with it all over again as a father, but on the other hand he feels better equipped than I do to deal with what a DS diagnosis might bring because he has already been there. Tough one!

Rachel x

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