mosaic down syndrome

[rouella]

Hello,
I'm new to mumsnet and would like to get to know others who have a child with MDS.
Many Thanks

Rou

Hi!
I would like to get to know others who have a child with Mosaic down syndrome. I have a 2 year old daughter with MdS.
Many Thanks

Rou

Hi Rou

My DD has a rare chromosome disorder in mosaic form. She has an extra bit of chromosome 9 which is in a ring shape (called supernumerary ring chromosome 9) and, on first testing, at about a week old, was I think 16 out of 30 cells with the extra material and 14 cells with 46 chromosomes. She's now 3.3 and making slow but steady progress, particularly in the last year.

Not the same I know but maybe a bit similar!

Hi Rou - welcome to MN!

My dd has DS, but it is the more common form of Trisomy 21, again not quite the same but fairly similar.

Hi Rou,

my daughter is 4 years old, and she is a twin, and she has mosaic Down Syndrome.

Have you checked out imdsa.org/ yet?

They also have a online support group for parents of kids with MDS.

Hi all, my name is Lauren and I am the coordinator for SWAN UK (Syndromes Without a Name) - we offer support and information to families of children with undiagnosed genetic conditions (www.swanuk.wordpress.com). We work closely with another organisation called 'Unique' who I just wanted to check you have heard off? They offer support to families with children with rare chromosome disorders www.rarechromo.org