trisomy voices

Episode 9- Amy Kuebelbeck

trisomyvoices — Mon, 28 Apr 2008 18:35:13 +0000

This episode we hear from author and perinatal hospice advocate Amy Kuebelbeck. She discusses her family’s journey with their son Gabriel and explains the perinatal hospice movement. You may contact her on her websites:

perinatalhospice.org

waitingwithgabriel.com

Also in this episode.

Gary David’s blog

Mieko’s Youtube video

Becca Trewin- Episode 8

trisomyvoices — Tue, 19 Feb 2008 14:42:06 +0000

Catherine Trewin, mother of Becca shares their journey. Becca is 33 years-old and has mosaic Trisomy 13.

Also in this episode:

skype

Episode 7-Jackson Lee

trisomyvoices — Mon, 10 Dec 2007 04:33:00 +0000

We hear from Wendi Lee, mother of Jackson Lee who has Trisomy 4p.

Jackson’s Website

Also in this episode:

Worldvision

Trisomy 18 Foundation’s Ornaments of Hope

igive and Noah’s Never Ending Rainbow

Online support groups:

ALL OF THE FOLLOWING ARE PRIVATE GROUPS!!! Membership by approval only…no one can see your posts unless they are a member.

The link to my group “Expecting-Blessings” has been altered accidently. Here is the new address, http://groups.yahoo.com/group/Expecting-Blessings/

I also have 3 other groups, “Awaiting-Angel-Blessings” for those expecting again following Infant Loss….a gift from their Angel above. http://groups.yahoo.com/group/Awaiting-Angel-Blessings/

“Wishing-on-a-Star” for those that are Trying-to-Conceive following Infant Loss. http://groups.yahoo.com/group/Wishing-on-a-Star/

“Broken-Hearted-Lullabies” for those that have opted for early birth for medical reasons and are living with regrets and heartache. I am here for you. http://health.groups.yahoo.com/group/Broken-Hearted-Lullabies/

Sometimes a trisomy brings with a Congenital Diaphragmatic Hernia. I am on the Board of Directors, and am a Moderator at the message boards here…. http://breathofhopeinc.com For further information my email address may be found at either of those sites.

Thank you, Melissa Roy–Bennett~Chadlen Roy’s proud mom, full trisomy 13 & chd

Episode Six- Isaac Miller/Trisomy 18 Foundation

trisomyvoices — Fri, 23 Nov 2007 00:28:12 +0000

In this episode we hear from Victoria Miller, mother of Isaac and Executive Director of the Trisomy 18 Foundation.

Trisomy 18 Foundation

Also discussed:

Toys R Us Differently Abled Toy Catalog

TRIS

Ablenet

Beyond Play

Episode 5-Noah’s Never Ending Rainbow

trisomyvoices — Tue, 13 Nov 2007 19:30:28 +0000

In this episode we hear from Dana Tehako-Esser, founder of Noah’s Never Ending Rainbow. She talks about her nephew Noah, who had Trisomy 2. Dana also discusses how her organization helps families dealing with rare trisomy disorders.

Noah’s Never Ending Rainbow

Also in this episode:

Recommended books:

Changed by a Child by Barbara Gill

Married with Special Needs Children by Laura E. Marshak and Fran P. Prezant

A Very Special Baby Book by Rhonda DeBough-Insook

Waiting with Gabriel by Amy Kuebelbeck

Announcements:

New online support group for families dealing with a difficult pre-natal diagnosis

Expecting Blessings

New Trisomy 13 Awareness Bracelet at livingwithtrisomy.org

Music by David Gielan

“Darkness (Leave the Light On)”

Caileigh DeWitt-Episode 4

trisomyvoices — Thu, 11 Oct 2007 04:01:18 +0000

This week we hear from Jackie Risner, mother of angel Caileigh with Trisomy 13.

Caileigh’s page on Living with Trisomy 13

Caileigh’s Angel Page

TRIS- Episode Three

trisomyvoices — Tue, 25 Sep 2007 04:40:34 +0000

Debbie Bruns speaks about a unique research project to help medical and educational professionals as well as families understand rare trisomy disorders. She discusses the findings of the survey, including developmental markers.

Debbie presented the information at the 2007 SOFT conference. Below is a photo of some of the attendees. You may get more information on the TRIS website. There’s a link on the right side of this page. You may also donate online. Also in this episode, we mention the Noah’s Never Ending Rainbow Fall FUNraiser. For more info on the Halloween Bash or to donate an auction item, contact Dana at

coreydana (at symbol) hotmail.com

dana(at symbol)noahsneverendingrainbow.org

or call 262.605.3690

* Please replace (at symbol) with @. I’m trying to avoid sending spam her way.

Music in this episode:

Extravagante e Exibido-Norberto Macedo by Ze Sao Paulo from the Podsafe Music Network.

Kameron Wolpert- Episode Two

trisomyvoices — Thu, 20 Sep 2007 19:40:21 +0000

This week we hear from Jude Wolpert. Her 10 year-old daughter Kameron (Kammie) has Trisomy 18. Jude discusses her pre-natal diagnosis, alternative therapies,counseling for siblings, and the SOFT conferences.

Here are links to Jude’s photos:

http://www.judewolpert.com

http://home.comcast.net/~jfwolpert2

http://flickr.com/photos/judewolpert/

You may contact Jude at jfwolpert2(at symbol)comcast.net

Pamela Rae- Episode one

trisomyvoices — Thu, 13 Sep 2007 16:33:51 +0000

This week we hear from the mother of Pamela Rae, a 12 year-old girl from British Columbia, Canada with full Trisomy 18. She discusses learning of the diagnosis, Pamela’s care and activities, and resources available in her area.

I’ve had some trouble with the speed of the recording on this site’s player. To listen, please click on the “audio mp3″ box to download to your computer. If you hit “listen” , it won’t be the correct speed. Sorry for the inconvenience. Thank you for listening.