Family Stories

Trisomy 18, Trisomy 13 and related disorders Family Stories
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Tell SOFT your child’s story – a photo sent with the story would be nice, too!  Please write a short story, sharing diagnosis, treatment and how it has changed your life…things of interest to other families, and don’t send only a link.    Remember that adding a story does not make you a SOFT member.   If you are not already a SOFT member, we ask that you register and become one prior to creating a story – it’s free!  Click on a name to open a child’s story, or see the file sorting instructions to the right of the picture bar.
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Before posting, please read:  The SOFT Family Story page is open to the public and can be viewed or linked to from outside of SOFT.    At appropriate times, SOFT will post links to these stories to highlight birthdays, anniversaries & other events on the SOFT website  and/or SOFT Facebook Group page.   Adding a story or your child’s information releases SOFT from any legal liability resulting from the adding of the story.  Family stories are about personal experiences and are not meant to replace the advice of your child’s physician. You should consult with your child’s health care provider(s) for medical advice or to discuss any opinions shared in Family Stories.

 








Name Diagnosis City State/Prov Country D.O.B. D.O.D.
Becca Trewin Mosaic Trisomy 13 Kitchener ONT Canada 01/01/1975
Sawyer Fagan Mosaic Trisomy 13 Providence Village TX USA 09/14/2009
Cooper Milham Mosaic Trisomy 13 Australia 03/16/2005
Isabel Hernandez Mosaic Trisomy 13 Brentwood NY USA 12/14/2010
Luke Mengel Mosaic Trisomy 13 Bealeton VA USA 06/30/1994
Ella Bewshear Mosaic Trisomy 13 London LN England 07/24/2012
Colton Simpson Mosaic Trisomy 13 Spotsylvania VA USA 04/30/2013
Samuel Jackson Mosaic Trisomy 13 Milan TN USA 11/28/1998
Manuela Thiago Mosaic Trisomy 13 and Monosomy X (Turner´s Syndrome) Rio de Janeiro RJ Brazil 09/18/2012
Gabby Arthurs Mosaic Trisomy 14 Trinity NC USA 07/06/2002
Noah Stoffel Mosaic Trisomy 16 Bremerton WA USA 02/01/2002
Cecilia Havre Mosaic Trisomy 18 Manhattan NY USA 10/25/2010
Brandon B. Mosaic Trisomy 18 Edmonton ALB Canada 07/07/1997
Ryan William Steele Mosaic Trisomy 18 Virginia Beach VA USA 12/23/1999
Sophia Moelk Mosaic Trisomy 18 Edwardsville IL USA 03/18/2011
Giuliana Lynn Mosaic Trisomy 18 Youngstown OH USA 08/04/2010
Vanessa Sofia Malave Mosaic Trisomy 18 Plainfield IL USA 09/19/2003
Lachlan Page Mosaic Trisomy 18 Maleny Queensland Australia 07/23/2010
Elijah Michael Sample Mosaic Trisomy 21 and Mosaic Trisomy 14 Hopewell VA USA 01/23/2010
Taylor Anderson Mosaic Trisomy 8 Crystal Falls MI USA 06/05/2000
Dowie (Da’ud) Bewley Mosaic Trisomy 8 Melksham Wiltshire England 10/15/04
Phillip S Mosaic Trisomy 9 Morton Grove IL USA 09/23/2007
Grace Mosaic Trisomy 9 N/A MA USA 04/27/2012
Elijah Estrada Mosaic Trisomy 9 Chino CA USA 11/21/2002
Maggi Blair Mosaic Trisomy 9 Atlanta GA USA
Jaxsen Sophia Lynn Jones Mosaic Trisomy 9 Aurora IL USA 08/04/2011
Natalia Traista Partial Trisomy 13 Mold Wales United Kingdom 08/13/2002
William “Bud” Hollis Muse Partial Trisomy 13 & 17 Santa Cruz CA USA 01/20/1993
Jacob Schneck, Jr. Partial Trisomy 16p13.3 with Plagiocephaly Gulf Shores AL USA 10/05/2011
Fiona McElliott Partial Trisomy 17 Dahlonega GA USA 07/08/2002
Gabriel Angel Vera Partial Trisomy 18 West Columbia TX USA 10/11/2007
Renee Seaver Partial Trisomy 18 / 8p- Medway MA USA 02/25/2009
Morgan McCormick Partial Trisomy 18 / 9- translocation N/A N/A USA 07/14/1997
Joseph Merrow Partial Trisomy 18, del 1q Unbalanced Translocation Lakeside CA USA 09/09/1994
Emerson Garst Partial Trisomy 18q Omaha NE USA 06/23/2011
Noah Thomas Campbell Partial Trisomy 2p+ Kenosha WI USA 10/10/2000 05/14/2001
David Roozeboom Partial Trisomy 3 Oskaloosa IA USA 06/16/1984
Cyrus Eads Partial Trisomy 4p/Monosomy 4 Clarksville TN USA 10/22/2013
Ivan Partial Trisomy 7 Grande Prairie ALB Canada 04/16/1997
Bennet McIlhenny Partial Trisomy 9 (9:21) Montpelier VA USA 09/26/1989
Samantha Martin Tetrasomy 18p Not Provided Alberta Canada 06/04/1993 12/03/2006
Vanessa & Jacob Jennings TRI14q32.33 Memphis TN USA 11/30/2001
Simon Dodart Trisomy 11Q Monosomy 20P North Ogden UT USA 6/19/2005
Eisha Vang Trisomy 13 Saint Paul MN USA 08/26/2005
Joey Reite Trisomy 13 Georgetown CA USA 03/06/2007
Kevin David Beck Jr Trisomy 13 Taylorsville UT USA 05/10/2012
Summer Schmidt Trisomy 13 Virginia Beach VA USA 10/21/2011
Rachel Emilia Nelson Trisomy 13 El Paso TX USA 02/22/2012 02/24/2012
Eleanor Pakala Trisomy 13 Appleton WI USA 05/30/2008 05/30/2008
Jessica Lauren Trisomy 13 South Deerfield MA USA 09/23/1991 2/12/1993
Ji’Ezra Seymore Trisomy 13 Syracuse NY USA 06/01/2003
Arianna Snell Trisomy 13 N/A N/A USA 06/19/2006
Annie Farlow Trisomy 13 Not given Not given Canada 05/25/2005 08/12/2005
Elijah Grinsell Trisomy 13 Sioux Falls SD USA 04/25/2010 04/25/2010
Angelica Marie Wilson Trisomy 13 Angleton TX USA 02/21/2013 02/21/2013
Sofia Poulin Trisomy 13 San Antonio TX USA 01/23/2004
Molly Grace Trisomy 13 Rosedale VA USA 10/21/1998 11/17/1998
Ezra Michael Rufener Trisomy 13 Redmond OR USA 11/02/2012 11/06/2012
Lorenzo Roel Tamez Trisomy 13 Edinburg TX USA 07/22/2007
Landon Vick Edwards Trisomy 13 Aurora CO USA 01/14/2012 01/14/2012
Cati Manea Trisomy 13 Piatra Neamt jud. Neamt Romania 04/26/2011
Naiyah Trisomy 13 Montgomery Village MD US 09/01/2009
Presley Crawford Trisomy 13 Salem IN USA 10/30/2012 02/24/2013
Natalia Marie Trisomy 13 Huntington Beach CA USA 08/25/2000
Ashlyn Simmons Trisomy 13 Maitland FL USA 01/26/2013
Daniel Vincent Winkles Trisomy 13 Grantville GA USA 06/05/2011
Evan Cotter Trisomy 13 Speonk NJ USA 05/11/2006
Dominic Anderson Trisomy 13 Farmington NM USA 08/06/2012
Nora Chappell Trisomy 13 Roswell GA USA 02/09/2013
Nicholas Cupo Trisomy 13 Tom’s River NJ USA 01/22/1989 02/03/1989
Audrey Regalado Trisomy 13 Torrance CA USA 01/10/2013 05/04/2013
Isabella Lawler Trisomy 13 Epsom NH USA 10/24/2012
Katherine Ivy Hall Trisomy 13 Arab Alabama USA 08/06/2013 08/11/2013
Elika Rayne Duenas Trisomy 13 Harker Heights TX USA 07/11/2009 07/22/2009
Emery August Hermsdorfer Trisomy 13 Shawnee KS USA 09/06/2013 09/08/2013
Chloe-Alexia Wrightson Gallagher Trisomy 13 Roscommon County Roscommon Ireland 05/07/2012 05/16/2012
Carter Lee Schulz Trisomy 13 Benton KY USA 09/18/2013 09/18/2013
Melanie Nicole Gutierrez Trisomy 13 Mexicali Baja California Mexico 09/27/2002
Addison Grundy Trisomy 13 Copperas Cove TX USA 01/17/2013
Jonathan McGinnis Trisomy 13 Boca Raton FL USA 04/25/2001
Nina Zambelli Trisomy 13 João Pessoa PB Brazil 02/27/2011 03/26/2011
Katie Slotkin Trisomy 13 Jacksonville FL USA 03/04/2001 05/03/2001
Elizabeth Marie Pryor-Hagstrom Trisomy 13 Palestine IL USA 09/09/1986 09/09/1986
Roman Isaiah Rivera Trisomy 13 Pasadena CA USA 01/14/2014 01/14/2014
Kylie Howe Trisomy 13 Waller TX USA 01/17/2012
Lily Anne Hudson Trisomy 13 North Ogden UT USA 10/21/2009 10/22/2009
Abbie Ann Johnson Trisomy 13 Thompsons Station TN USA 10/22/2013 10/22/2013
Delainey M. Disna Trisomy 13 Steinbach MB Canada 04/27/2012
Mataya Grace McLeslie Trisomy 13 Newport WA USA 10/21/2013 10/27/2013
Ali Elizabeth Hygema Trisomy 13 Warsaw IN USA 07/03/2013
Devon Victor Trisomy 13 Balanced 5/13 Translocation Deland FL USA 06/15/1995
Corbin McHenry Trisomy 13 Robertsonian Translocation Havelock NC USA 04/04/2013 08/17/2013
Alexander Wyatt Flores Trisomy 13 Robertsonion Translocation Unstated Unstated USA 01/01/01
Isabella Josephine Wolfe Trisomy 13 with Holoprosencephaly Timonium MD USA 05/23/2011 05/24/2011
Hailey Rayelle Saunders Trisomy 13, Monosomy 22 Saskatoon SK Canada 01/27/2013 05/18/2013
Trinity Smith Trisomy 18 Dorris CA USA 11/16/2012 2/26/2013
Sofia Terry Trisomy 18 Waynesboro PA USA NM
Emmanuel Teoh Trisomy 18 Foothill Ranch CA USA NM
Amilah Straus Trisomy 18 London LND England 02/10/2012
Annabel Grace Shelander Trisomy 18 Beaumont TX USA 03/17/2005
Ella Marohn Trisomy 18 Downer’s Grove IL USA 07/31/2002 08/13/2007
Kristina Krotzer Trisomy 18 Auburn WA USA 03/25/2000
Mollie Foster Trisomy 18 Auckland AUK New Zealand 08/12/2004
Lane Hauber Trisomy 18 Springtown TX USA 12/08/2008
Louise Ruth Pass Trisomy 18 BOBS FARM NSW Australia 01/23/1990 07/02/1990
Lyndsay Stockman Trisomy 18 Suffolk VA USA 07/20/2000
Saskia Elizabeth Herdman Trisomy 18 London LND England 02/18/1992
Julia Johnson Trisomy 18 New Britain PA USA 10/31/1985
Travis Boles Trisomy 18 Amarillo TX USA 10/12/2011 11/27/2011
Leilani Meggett Trisomy 18 Fort Meade MD USA 05/03/2000
Rebekah Faith Budd Trisomy 18 Greenville SC USA 04/21/2009
Isaac Quinn Miller Trisomy 18 Woodbridge VA USA 02/19/2001 03/02/2001
Megan Elizabeth Barnes Trisomy 18 Chapel Hill NC USA 07/08/1985 12/29/2004
Madeline Rose Desmond Trisomy 18 Hyde Park MA USA 11/15/2011 01/03/2012
Gabriel Aubele Trisomy 18 New Kensington PA USA 09/19/2011
Evangeline Wilson Trisomy 18 Niceville FL USA 10/11/2011 10/11/2011
Stacy Lynn VanHerreweghe Trisomy 18 Rochester NY USA 05/21/1981
Mieko Johnson Trisomy 18 St. Paul MN USA 03/09/2004 07/11/2008
Simon Crosier Trisomy 18 Webster Groves MO USA 09/07/2010 12/03/2010
Kayli Whistler Trisomy 18 Cary IL USA 04/21/2009
Akaiya Davis Trisomy 18 N/A N/A USA 09/04/2002
Aaron Peterson Trisomy 18 Alpine UT USA 06/13/2010
Gianna Caeli Henninger Trisomy 18 N/A N/A USA 12/22/2010 01/05/2011
Erin Jorgenson Trisomy 18 SD USA 11/04/1994 05/04/1995
Kameron Wolpert Trisomy 18 N/A N/A USA 05/08/1997
Carey Ann Neufeld Donaldson Trisomy 18 Sherwood Park ALB Canada 09/27/1983 06/18/2012
Julia Grace Childress Trisomy 18 Burke VA USA 11/30/2010 12/16/2011
Jonelle Calderwood Trisomy 18 07/21/1988 12/06/2012
Alexis Sophia Alves Trisomy 18 Leicester MA USA 01/05/2012 09/07/2012
Grace Ava Williams Trisomy 18 Slough Berkshire England 11/23/2012 04/25/2013
Alissa LeeAnn Johnson Trisomy 18 Joshua Tree CA USA 07/31/2012
Twila Elise Clifton Trisomy 18 Albuquerque NM U.S.A. 10/18/2011
Crystal Faith Magtoto Trisomy 18 Los Angeles CA USA 12/02/2011
Tiffany Lauren Williams Trisomy 18 East Elmhurst NY USA 08/24/1988
Eden Holly Trisomy 18 05/04/2012
Leila Hope Adamson Trisomy 18 Fond du Lac WI USA 12/28/2011
Francine Crossley Trisomy 18 Toronto Ontario Canada 05/21/1997
Tristan Lee Hall Trisomy 18 Blackpool Lancs England 01/23/2008
Lilly Hollowell Trisomy 18 Moncure NC USA 07/04/2010 12/15/2011
Natasha Bulaya Trisomy 18 Providence RI USA 07/15/2011
Donnie Heaton Trisomy 18 St. Petersburg FL USA 09/10/1992
Anna Marie Elizabeth Storey Trisomy 18 Decatur IL USA 09/20/1989 07/02/1990
Abigail Renee Wheat Trisomy 18 San Antonio TX USA 08/09/2002
Amy Kathleen Santoso Trisomy 18 Berlin Berlin Germany 04/26/2013 08/24/2013
Raymond Anthony Papalia, II Trisomy 18 McAlester OK USA 03/22/1989 08/26/1989
Ivan Delve Trisomy 18 Basildon Essex United Kingdom 08/03/2013
Kara Caine Trisomy 18 Felton DE USA 12/02/2012
Claire Juliette Watson Trisomy 18 Longview TX USA 10/26/2012
Nicole Jennifer (Nikki) Waege Trisomy 18 Chetek WI USA 02/10/1986 02/12/2004
Micah Alsup Trisomy 18 Clarkston MI USA 08/15/2013 08/15/2013
Emmanuel Dixon Trisomy 18 Se Ada MI USA 10/30/2013 10/30/2013
Angelo Jack Smith Trisomy 18 Northampton England UK 10/27/2012 10/27/2012
Regan Adeline Lawson Trisomy 18 Dyer IN USA 11/04/2010 11/04/2010
Amazing Grace Browning Trisomy 18 Nabb IN USA 04/27/2013 06/27/2013
Kayden McClanahan Trisomy 18/13 translocation Baxter MN USA 06/19/2001
Jacob Lyda Trisomy 19q Hendersonville NC USA 03/30/1989 12/27/2004
Gavin Kowalski Trisomy 2 & 15 Oak Harbor WA USA 09/30/2011
Ethan Goodwin Trisomy 2p duplication 08/27/2008
Rachael Wiekierak Trisomy 3/8 translocation Comstock Park MI USA 03/07/1980
Aralyn Faith Walden Trisomy 8 N/A N/A USA 07/26/2010