~ What’s New in the SOFT Trisomy Registry? ~
WHAT’S NEW additions of FAMILY STORIES and NEWS EVENTS can be sent to your email inbox. Click on the blue link to go to a service which will do this for you: http://www.followthatpage.com
news-about-trisomy as the page to follow, and your email address, and you will be automatically notified each time the page is updated.
Scroll down to see new family stories which have been added and scroll down below those to see Trisomy News items!
07/21/2014 – Sofie’s Story (an update)
07/21/2014 – Bradley’s Story
07/20/2014 – Michael’s Story
07/14/2014 – Lila’s Story
07/14/2014 – Mary Elizabeth’s Story
07/02/2014 – London’s Story
07/01/2014 – Eleora’s Story
06/25/2014 – Sofie’s Story
06/24/2014 – Abbey’s Story
06/22/2014 – Muireann’s Story
05/20/2014 – Tucker’s Story
05/19/2014 – Rebecca’s Story
05/19/2014 – Kayla’s Story
04/03/2014 – Hailey’s Story
The News Section:
♥ stay tuned!
♥ 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.
♥ 06/07/2014 Lynne Wiser Stockman, D.O., a family practitioner with Bayview Physicians Services, has been recognized and honored by Hampton Roads Physician Magazine for her good deeds and volunteer service. Doctor Stockman chairs the 2014 SOFT Conference in Norfolk. Read the news article here.
♥ 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.
♥ 12/2/2013 – Disabled Baby Denied Heart Transplant Dr. John Carey is mentioned in this article.
♥ 11/23/2013 See article about a 98% Trisomy abortion rate from a large sample of pregnancies, in the Japan News.
♥ 11/16/2013 An emerging practice area: What is a Neonatal Therapist? A Neonatal Therapist is an Occupational or Physical Therapist or Speech Language Pathologist who provides direct patient care and/or consultative services for the premature and medically complex infants in a Neonatal Intensive Care Unit (NICU). Read the article here.
♥ 11/5/2013 Fate of Tiny Hearts in Right Hands - A YouTube video about Dr. Charles D. Fraser, who has performed 10,000 operations on children’s hearts, including fixing the hearts of children with trisomy.
♥ 10/28/2013 SOFT has added a birthday finder page to the website. Use it to find a child’s birth date or angel date. Then send an e-card!
♥ 10/28/2013 SOFT has added an e-card system to the website, which can be used to send birthday, condolence, remembrance or any type of card to a friend. Give it a try!
♥ 10/26/2013 The SOFT Facebook Group page has been made private – click here to sign up now to continue the conversation!
♥ 10/24/2013 “Silencing of trisomy 21 by manipulation of a single gene in living cells in laboratory cells surmounts the first major obstacle to development of potential …“
♥ 10/14/2013 A beautiful documentary on living with a child who has a trisomy condition.
♥ 10/14/2013 Natera Expands PanoramaTM to Include Detection of Triploidy … National Post. Natera launched Panorama in March 2013 for the detection of trisomy 21 (Down syndrome), trisomy 18 (Edwards syndrome), trisomy 13 (Patau syndrome) and … See all stories on this topic »
Verinata Health’s verifi(R) Prenatal Test Expanded to Include Option … Wall Street Journal. The verifi(R) prenatal test for twins can detect trisomy 21 (Down syndrome), trisomy 18 (Edwards syndrome), trisomy 13 (Patau syndrome) and the presence of a … See all stories on this topic »
♥ 10/7/2013 Personal health records kept by patients still best resource: http://www.newsobserver.com/
2013/10/04/3253538/ misperceptions-on-electronic- health.html
♥ 10/4/2013 Survival Rates, Times Noted for Live Births With Trisomy 13 and 18 Wu et al suggest that detailed and accurate information about the survival of children with trisomies 13 and 18 should be provided to parents, genetic counselors, and health professionals caring for affected families. American Journal of Medical Genetics Part AVolume 161, Issue 10, Article first published online: 17 SEP 2013
♥ 9/21/2013 Some new Medicare/Medicaid information has been posted to the Family Support page.
♥ 9/16/2013 A Place I Consider Beautiful Written by Conor (age 16), Muireann Shionagh Dunne’s brother. Muireann had Trisomy 13 and lived from April 15, 2012 to May 27, 2012.
♥ 9/13/2013 Baby with Trisomy 13 lives 135 days and reaches 500,000 Facebook … When Kara McHenry found out she was pregnant, there’s no way she could have known the impact that her child would have on the world. When the doctors told …
Read Corbin McHenry’s Family Story here.
♥ 9/10/2013 A Very Special Birthday for a Young Man with Trisomy 18 PLoS Blogs (blog). Trisomy 18 was in the news during the last presidential election because Rick Santorum’s young daughter Isabella has it. Her mom was 48 when she gave birth. On September 10, 2013, Donnie Heaton celebrated his 21st birthday! Read Donnie’s Family Story here.
♥ 8/15/2013 ‘Miracle’ baby defies odds, inspires thousands An incredible 131-day-old baby born earlier this year with a rare genetic condition continues to…
Read Corbin McHenry’s Family Story here.
♥ 8/11/2013 ‘He’s a happy baby’ Times Daily. Drake has three genetic abnormalities — mosaic trisomy 18, mosaic trisomy 4 … “If we say it is mosaic trisomy, that means that some of the cells may have 46 … See all stories on this topic »
♥ 8/11/2013 Northville couple inspired to run in Detroit Marathon in baby girl’s … Detroit Free Press. Claim to fame: Newlyweds running the Detroit Free Press/Talmer Bank Marathon to raise money for Sophia Allen, who died as an infant because of Trisomy 13, …
♥ 7/1/2013 The table showing hospitals where cardiac procedures have occurred has been updated with data through June 30, 2013
♥ 6/9/2013 Michigan Law Helps Patients Stop Denial of Lifesaving Medical Treatment LifeNews.com A loved one is desperately ill but a health care facility or provider refuses life-saving treatment on the grounds that this care is “futile.” This is occurring, with increasing frequency, all across the U.S. In many cases, health care providers call …
Click here to see the News Item Archive where older items are stored.