trisomy voices

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

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

Also in this episode:

skype

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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

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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

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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)”

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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

Other links in this episode:

Hope Kids

Trisomy 18 Foundation Ornaments of Hope Campaign

Music by David Gielan

“Darkness (Leave the Light On)”

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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

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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

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.