[tri-med] Re: New to the List

Welcome Evelyn, Connor and family,

You will get lots of support on this list, and I think there is one other 
family with T8. Even though the families on the list are mainly T18 and T13 
we all share the same experiences of feeding, speech, mobility, sleep apnea 
issues etc etc. You must be very proud of your son when he spoke on the 
panel. I am here because of our grand daughter Tess who has T18 and is 
eight and a half years old. Tess is non-verbal, but communicates with head 
shakes and claps, and looks that convey her feelings. She has a wheelchair, 
a Hart walker, can sit supported, stand supported. She is a happy little 
girl and very much loved by her family. She knows all her family members 
and friends, in fact she understands a great deal, and much more than she 
can communicate.

There are many children on the list who are mosaic and therefore high 
achievers (relatively speaking) and I think someone will have forwarded to 
you already our conveners explanation of mosaicism.

Welcome to our list.

At 09:13 AM 25/09/2005 -0400, you wrote:
>Hi Everyone,
>
>My name is Evelyn Dichter, I am the mother of a 15 year old boy, Connor,
>with Trisomy 8 Mosaicsim.  He also has agenesis of the corpus callosum.
>I recently attended a conference this past summer for people who have
>ACC where he was a speaker on a panel.  It was a wonderful experience
>for him.  The conference offered many seminars on transitioning into
>adulthood and SSI / Medicare / Medicaid benefits.  Since then I have
>been getting together all of Connor's medical records and have made an
>appt. for his geneticist, whom we have not been to see in 8 years.  I've
>almost always focused on the ACC vs. the trisomy 8, but the other day I
>started googling trisomy 8 and was surprised to see there was much more
>info since the last time I googled it.  That is how I wound up on this
>list.  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.
>
>Thank you,
>Evelyn Dichter, mom to Connor, 15, C-ACC & Mosaic Trisomy 8, and Erin,
>17.  Wife to Jason, Medford NJ.
>-- Binary/unsupported file stripped by Ecartis --
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>
>
>                   Building ___ooOOoo__ Rainbows
>                        www.trisomyonline.org
>                   Families Helping Families On-line

Jocelyn, Wife to Frank, Mother to Ian, Gillian and Susan
Nanna to Carly 18, Mathew 16, Ashleigh 15, Alex 13, and Tess 8 (Full T18)
Living in North Richmond NSW, Australia 


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

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