[tri-med] Re: New to the List

----- Original Message ----- 
From: "Evelyn Dichter" <dichter@xxxxxxxx>
> My name is Evelyn Dichter, I am the mother of a 15 year old boy, Connor,
> with Trisomy 8 Mosaicsim.

Hi and welcome Evelyn! Our son Alex is 18 with a diagnosis of partial
trisomy 14 mosaic.  :0)
Glad to meet another 'rare, rare'.

 The conference offered many seminars on transitioning into
> adulthood and SSI / Medicare / Medicaid benefits.

That's something I began exploring this year myself. Thus far we'd had no
'outside' help for Alex and have taken care of it all ourselves.

We just got Alex on Medicaid (as a 'household of 1' which didn't take into
account our income). We did however just find out that Alex isn't 'bad
enough' to qualify for the childrens dept/services with the local Community
Mental Health..although our caseworker for the 4 months we were working on
it did get the Medicaid done! She was here last week and said they wouldn't
accept Alex because he was 'doing too well' but she thought she could get
him a caseworked in the Adult Dept. So we're going to explore that option
now.

  and have made an
> appt. for his geneticist, whom we have not been to see in 8 years.

We're about the same with the geneticist......been a long time.

 I'm interested to hear from anyone else out there with trisomy 8,
> and was hoping someone could explain the "mosaic" part of the diagnosis
> to me.

While we're a different trisomy 'flavor' we all have similarities and the
support here is great. I'll post a response/information about the types of
trisomy....including mosaic.....that list Mum Karen posted. It should help
with some of your questions.

Michelle mom to Alex (18, partial trisomy 14 mosaic) and Molly (14)
MichiganUSA

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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