Welcome to TrisomyTalk!

Welcome to TrisomyTalk!

 
Terre & Krissy Soft Picnic 2011Hi, I am Terre. My reason for being here is my daughter Kristina who is 14 years old and was born with the genetic syndrome of Trisomy 18. We were told at the time she was diagnosed that it was likely she would not even survive to birth and if she did, she would certainly die soon after. We have been blessed and the heartbreaking prognosis did not become our reality. Sadly, not all families are so fortunate. Many have the heart wrenching experience of saying goodbye far too soon. And other’s, whose children do survive are left fending for themselves in a world that often overlooks the incredible affect and legacy that these children bring to the world.

Every child’s life matters regardless of how much time they have to spend on this spinning planet we call Earth. They each carry with them a message of hope, a message of courage and most of all they bring love. A love that will forever change the lives of all who hear their story.

TrisomyTalk.com was launched a couple of years ago with the sole purpose of supporting and promoting the joy and beauty of children (and adults!) with a Trisomy diagnosis. Our intention is to spotlight our beautiful joyous children and provide you, the parents, family and providers of these kids, with information and ideas that will help you, your child and your family on your Trisomy Journey, where ever it may take you.

If you are newly diagnosed we will help you get through the scary times, if you’re a seasoned parent we’ll help you be ready for the next stages of your child’s development. Together the Trisomy Roller Coaster doesn’t seem quite so crazy!

Our webinar series will begin again soon. Watch for an updated schedule to be posted very soon with live online webinars relevant to your life and journey with your very rare and unique child. To stay up to date please subscribe to our mailing list.

Help us bring you the information that you need most by completing our survey. This is your chance to help determine what some of those topics will be and to speak up and ask for the information you need! Click here to complete the survey and let us know how we can help you!

What's New on TrisomyTalk!

Welcome to the Jump4Trisomy Awareness Challenge

Welcome to the Jump4Trisomy Awareness Challenge

Welcome to the Jump4Trisomy Awareness Challenge! Why did we choose jumping for our awareness challenge? We wanted an activity that is easily adaptable for any age or ability. Jumping Jacks inspired us…they can be done sitting, standing, or laying. Modifications such as just using arms or legs can be made while still completing the challenge.…Continue Reading

Constipation 101 – Understanding Constipation in Children with Trisomy 18 and Trisomy 13

Constipation 101 – Understanding Constipation in Children with Trisomy 18 and Trisomy 13

  Constipation 101 Video Presentation ***To help you get the most from this information we suggest you download and print a copy of the transcript of the presentation so you can follow along and highlight points of interest. Click here and scroll down to “Constipation” to download a transcript of this presentation. Constipation is likely the…Continue Reading

Incredible Halloween Costumes for Kids with Special Needs

Incredible Halloween Costumes for Kids with Special Needs

Who says being in a wheelchair means you can’t have an awesomely epic costume for Halloween? Tonight as you open your door to Treat or Treaters everywhere you’re likely to see some amazing costumes. Kids dressed as their favorite Super Hero or characters from their favorite Disney movie. There will be ghosts and goblins, zombies…Continue Reading

“What are All Those Ribbons For?” Running 4 Trisomy Spreads Trisomy Awareness!

“What are All Those Ribbons For?” Running 4 Trisomy Spreads Trisomy Awareness!

What are all those ribbons for? That’s the first question people ask when they see Larry and Krissy on race day! Each time Larry and Krissy race, Krissy’s running chair is covered with ribbons in a rainbow of colors. Each ribbon represents a Trisomy child, whether living or passed. We think its important for folks to…Continue Reading

Incredible Video Highlights the Running 4 Trisomy Mission!

Incredible Video Highlights the Running 4 Trisomy Mission!

Krissy and Larry participated in their 2nd Half Marathon in March in San Antonio, TX at the Alamo 13.1. This incredible video interview highlights that race and the mission behind Running for Trisomy! Next stop, the Portland Half! Help support the mission here: http://www.gofundme.com/dko9qw Larry and Krissy Story – Alamo 13.1 from Alex Quintana on Vimeo.…Continue Reading

Teen with Mosaic Trisomy 18 Responds to Richard Dawkins Comments on Down’s Syndrome

Teen with Mosaic Trisomy 18 Responds to Richard Dawkins Comments on Down’s Syndrome

Please take a moment to read and watch the video. Our friend Brandon, a teenager with Mosaic Trisomy 18 responds to comments made recently by Richard Dawkins stating his belief that all Downs Syndrome babies should be terminated to avoid suffering. Here is some background on the comments that Brandon is referring to: This taken…Continue Reading

SOFT News

Welcome to the Jump4Trisomy Awareness Challenge

Welcome to the Jump4Trisomy Awareness Challenge

Welcome to the Jump4Trisomy Awareness Challenge! Why did we choose jumping for our awareness challenge? We wanted an activity that is easily adaptable for any age or ability. Jumping Jacks inspired us…they can be done sitting, standing, or laying. Modifications such as just using arms or legs can be made while still completing the challenge.…Continue Reading

SOFT Trisomy Awareness Month Promotional Items

SOFT Trisomy Awareness Month Promotional Items

Trisomy awareness bracelets are here… Are you “Trisomy Strong”? Just in time for Trisomy Awareness month! SOFT has created Trisomy Awareness items to help you create Trisomy Awareness in your own community. Share them at with your family, friends, school, therapy centers and anywhere you want to promote Trisomy Awareness. Share your story and let them…Continue Reading

Registry of Surgeries Performed on Trisomy Children – One of many Resources SOFT Provides!

Did you know that your membership with SOFT benefits more than just you? Its true! SOFT maintains a registry of surgeries performed on children with a Trisomy reported by parents on their membership forms. This information can sometimes help other families find doctors. The registry is also a resource for studies which help doctors learn…Continue Reading