News About Trisomy – What’s New?

WHAT’S NEW notifications of FAMILY STORIES  and NEWS EVENTS can be sent to your email inbox each time the page is updated.  Click on the blue link to go to a service that will do this for you:  http://www.followthatpage.com
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Scroll down to see a list of recently added family stories and scroll down
below those to see Trisomy News items!

 

Jump to Family Stories Page

06/16/2017 – Averie’s Story (trisomy 18)
06/16/2017 – Hayden’s Story (trisomy 13)
06/16/2017 – Hailey’s Story (trisomy 13) revision

05/24/2017 – Ashlyn’s Story (trisomy 18 and Stage 4 Hepatoblastoma)

04/12/2017 – Sawyer’s Story (trisomy 13)

03/21/2017 – Charlie’s Story (trisomy 13)

03/21/2017 – Mimi’s Story (trisomy 18 mosaic)

03/02/2017 – Frank’s Story (trisomy 18) update

02/15/2017 – Jordan’s Story (trisomy 18)
02/12/2017 – Saralyn’s Story (trisomy 18) update

02/12/2017 – Bud’s Story (partial trisomy 13) update

02/12/2017 – Nora’s Story (trisomy 18)

01/18/2017 – Amara’s Story (trisomy 18) update
01/05/2017 – Toby’s Story (trisomy 18)

12/22/2016 – Addy’s Story (trisomy 18)
12/20/2016 – Laila’s Story (1q41q44 10p15.3p14)

12/20/2016 – Ryleigh’s Story (trisomy 18)

12/04/2016 – Amara’s Story (trisomy 18) update

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What's New

What’s New in the world of trisomy?

 05/23/2017  A story in the Greenville, TN Sun about caring for Brilen who was born with trisomy 13, and his Maxim home health Nurse, Melissa Seal, LPN.

♥  05/22/2017  An article in The Complex Child magazine deals with managing oral and respiratory secretions.  Look under “Medical or Surgical Information” on this page for the link to this article.

♥  05/19/2017  The ultimate List of Grants and Resources for Families with Special Needs can be found at this link!

 03/02/2017  Portraits by Dana have been added to the “Helpful Organizations” website page:   “For the last 18 yrs I have specialized in gently-drawn pencil portraits for families who have suffered an early loss. Many thanks and blessings.”
Website: http://www.portraitsbydana.com/
Facebook: https://www.facebook.com/portraitsbydana

  02/28/2017   Two new links to information about Apnea have been added to the site and can be found at Resources>Helpful information.  They are:
Pediatric Apnea – a Medscape overview.
Infant Sleep Apnea – Diagnosis & Treatment

  02/17/2017  Doing the Right Thing: Raising money for SOFT:  Ann Hameister organizes a bowling tournament to raise funds for SOFT.

 11/10/2016    18 month-old with rare genetic condition survives against the odds.   When Amy Strasburg gave birth to her baby girl, Avery, in February 2015, the joyous day had come after a “healthy, normal pregnancy.”   But Amy and her husband, Andy, as well as Avery’s doctors, knew something was wrong.
 9/30/2016  The latest issue of the American Journal of Medical Genetics is dedicated to trisomy 18 and 13 conditions. Dr. John C. Carey, SOFT’s medical advisor, edits the journal, and the articles are available for reading.  Click the link and the publisher’s website will open.  Scroll down to select the article you want to read.

amjgThe cover photographs were taken by Rick Guidotti, famous photographer and founder of Positive Exposure, at the 2016 SOFT Conference in Tacoma, WA. The children have full trisomy 13 or 18 except for one girl with mosaic trisomy 13.

 

 

 

♥  3/21/2016  Trisomy 18 Awareness March held on World Down Syndrome Today
  3/19/2016 Olivia Wilde Plays a Girl with Down Syndrome in eye-opening film

 02/02/2016  Publication of data from a CombiMatrix study supporting the value of follow-up diagnostic testing to either confirm or rule out positive results for common chromosomal aneuploidies and microdeletion syndromes detected by non-invasive prenatal testing (NIPT).
01/31/2016  The February issue of Complex Child e-Magazine is their annual feeding tube and GI issue, which might be of interest to many.

 09/25/2015 Otolaryngologic surgery in children with trisomy 18 and 13.    This article describes the role of the otolaryngologist in the management of children with trisomy 18 and 13.
 09/07/2015  Project offers help to parents of children with trisomy.  CARBONDALE, Ill. — Bewilderment can quickly turn to fright when parents discover their children have a rare genetic condition such as Edwards syndrome or trisomy 18. They are often told their children have a condition that is “incompatible with life.”

♥  08/29/2015  Concurrent Care for Children:  The 2010 Affordable Care Act (PPACA) contains a new provision, Section 2302, termed the “Concurrent Care for Children” Requirement (CCCR).   The District of Columbia Pediatric Palliative Care Collaborative (DCPPCC) and the National Hospice and Palliative Care Organization (NHPCO) have provided the Concurrent Care for Children Implementation Toolkit, which details information on the options available to state Medicaid programs implementing Section 2302 or which are considering expansion of pediatric palliative care services to children living with life-limiting or life-threatening conditions.

 06/30/2015  Doctors go on-line for Medical Information, too.  An article from the Wall Street Journal about the on-line availability of information concerning rare disorders.
♥  06/12/2015  What parents with a baby in heaven want you to know (but may not say)
06/06/2015  First national study of noninvasive prenatal testing shows it works   Glasgow, United Kingdom: Results from a national study of non-invasive prenatal testing (NIPT) in women at high risk of having a baby with Down’s syndrome will be presented at the annual conference of the European Society of Human Genetics today (Saturday).

 05/19/2015  “Alexander the Great” – He was tougher than any diagnosis!  A story about Alexander Flores, Trisomy 13
 05/14/2015  Top 5 States with Best Services for the Disabled
  05/06/2015   Never Say Never about our child – an article in the BMJ (formerly the British Medical Journal).  In the latest of a monthly series in which patients and care-givers set the learning outcomes for readers, Alison Pearson asks healthcare staff to reconsider the concept of offering “false hope.”
  05/05/2015  Read Terra Garst’s Story about the arrival of Emerson (trisomy 18)!

04/16/2015  Marshall School of Medicine honors two with new scholarships  One scholarship is named after Faith Fry, who suffered from a rare congenital anomaly, Trisomy 18, and died last year at 11 years old. During her life …  (from WOWK-TV)
 04/11/2015  The National Institute of Health (NIH) has published an interesting study about pre/post-natal care and survival rates for children with Trisomy 18 and 14.
 04/08/2015  SOFT has signed the United Nations Geneva “Declaration to stop the use of the term “incompatible with life.” 
 03/09/2015  A new study “A Contemporary, Single-Institutional Experience of Surgical Versus Expectant Management of Congenital Heart Disease in Trisomy 13 and 18 Patients” shows how cardiac surgery can result in saving the lives of children with trisomy 18 and 13
♥ 03/08/2015Grief Shared is Grief Lessened – read a word picture of parent feelings.
03/05/2015  Watch a video about7 year old Amanda Cugurs of Montreal, Canada,who has trisomy 18 (it’s a bit slow to load; be patient and wait through the advertisement).

♥  02/17/2015  Santorums’ new book reveals how faith and love are tested by a daughter’s disability   Bella’s disorder, Trisomy 18, is a rarer, more lethal cousin of Down syndrome. Only half of those born with it survive a week; fewer than 1 in 10 make it …

 01/14/2014  St. Louis Fetal Care Institute Implements New Approach To Trisomy 13 and 18 Syndrome Diagnoses.  Increased prenatal diagnoses lead St. Louis Fetal Care Institute team to try new approach for families facing trisomy 13 or trisomy 18 .  02/09/2015:  Medscape Article:  Trisomy 18 Clinical Presentation
01/03/2014  Boys write book about baby brother’s battle with chromosome disorder
 12/04/2014 They Said This Baby Was “Incompatible With Life,” Now She’s 8 Years Old
12/03/2014  See News about Trisomy Here!
12/03/2014  NEWTON FALLS, Ohio – Two Trumbull County high school basketball teams tipped off Saturday night to raise awareness and money for a rare chromosomal disorder.   Organizer Alyssa Giesy and her fiancé lost their daughter, Dawson Seydler, to complications of trisomy 13.  Giesy says the members of SOFT were very supportive. “We want to be able to give back to families who gave to us. They gave us great advice, great help when going through the loss of our daughter. So we just want to give back to that,” Giesy said.  450 people turned out for the game and the event raised $1,400.
 11/13/2014   “Hello My Name is Simon”  by Sheryl Crosier and as told by Samuel  and Sean Crosier.  This book is about a very special relationship among three brothers. Even though Simon, their baby brother, has died, his older brothers continue to have conversations with him.
 7/14/2014  Rick Giodotti, a professional photographer, takes photos of our children.  See some here!
 7/14/2014:  Rather than hide in pain, Trisomy 18 parents take to the web to celebrate life.  A family reacts positively to a diagnosis of trisomy 18.
  05/25/2014  “I’m pro-choice, but choosing life for my trisomy 18 child was the right choice”
  05/19/2014  The 2014 updated e-book edition of the “Care of the Infant and Child with Trisomy 18 or 13” has been posted to the website.  The e-book is free and may be downloaded to your PC for reference and reading at your convenience.  Get it from the website homepage!
  05/16/2014 SOFT Surgery Tables have been updated with the latest data.  See the tables here!
  05/05/2014  A link to the Complex Child E-magazine has been added to the website homepage right sidebar, in the “Family Connections” section.  This magazine has a wealth of information.
Morghan, Faye and Mark represented SOFT at the 2014 annual American College of Medical Genetics in Nashville.
 03/24/2014  Army Officer, teen paired in half-marathon for a cause!  Krissy’s San Antonio 13.1 run!
  03/16/2014   http://bloom-parentingkidswithdisabilities.blogspot.ca/2014/03/when-technology-doesnt-have-all-answers.html  For parents of those with related disorders….a  reflection on the discovery that her son’s genetic condition can now be detected through prenatal microarray by Louise Kinross
02/23/2014 Feeding Tubes, NICU, One-on-One Care: Susan Hatfield Talks About Living With Her Trisomy 18 Baby
02/14/2014  Study reveals what we already know:  Medical treatments and hospital care can have a beneficial effect on Trisomy 18/13 lifespans.
01/07/2014  “More Than a Diagnosis” – The latest from Annie Janvier and team, a publication describing the experiences of families in their internet support group questionnaire study.
01/07/2014 Twenty-two survivors over the age of 1 year with full trisomy 18: Presenting and current medical conditions.  The purpose of the study is to provide data about 22 survivors over the age of 1 year with full trisomy 18 (12-59 months)….  by Debbie Bruns (a SOFT member) and E. Campbell
  12/11/2013  The first newsletter of the International Trisomy Alliance is published!!!
Dr. Carey wrote a wonderful introduction and Dr. Moore wrote about her challenging experience with doctors when her baby Anaya was born with trisomy 18.