Living With Trisomy 13 has its first Trisomy 18 Story!!!

Thank you to Alisha and Alex Hauber the founders of TAG for sharing their son Lane's story with us. If you have your own Trisomy 18 or other rare diagnoses story to share please visit our share your story page  http://www.livingwithtri13.org/shareyourstory.html

"Lane is now 3 1/2 years old and he's fighting the good fight! We are so proud of our little boy and he has taught us how to be better parents and advocates!"

http://www.livingwithtri13.org/albumlane.html

Happy 6th Birthday Arianna!!!!

Happy 6th Birthday to a very special girl with Trisomy 13!!!

Arianna Jolie Snell

Born: June 19, 2006

West Jordan, Utah (UT) 

 

 "I update our family blog often to keep our friends and family in the loop, please stop and visit sometime. AriannaJolieSnell.blogspot.com"

See Arianna's Full album here
http://www.livingwithtri13.org/album65.htm

THE VOICE OF A RARE CHILD

Please take a moment and read this article we just had published in YOUR PREGNANCY a magazine in South Africa.

http://www.yourparenting.co.za/child/special-needs/living-with-trisomy-13 

A very special thank to YOUR PARENTING for publishing this article and helping us to spread awareness!

For the boy who was never supposed to live, a birthday bash

For the boy who was never supposed to live, a birthday bash

From the article, read the full article here http://www.ksl.com/?sid=20875687&nid=1010

SALT LAKE CITY — Aaron Peterson was never supposed to make it this far.

He is "not compatible with life," according to some doctors. Born with Trisomy 18, a genetic disorder that comes with a host of life-threatening medical conditions, Aaron has been defying the odds for two years.

To celebrate Aaron's success, Rebekah threw him a birthday party on Wednesday. Last year, his birthday party drew hundreds. This year, too, saw a crowd.

My son is not a genetic 'fault' -- the downside of prenatal genetic testing - Fox News

This is the reality of prenatal testing. While some may argue that it gives parents more time to prepare medical interventions and to prepare for caring for a disabled child, many will tell you that it only allows medical professionals more time to convince parents that abortion is the more caring option. Please be sure to read the full article below.

My son is not a genetic 'fault' -- the downside of prenatal genetic testing

Read more: http://www.foxnews.com/opinion/2012/06/08/my-son-is-not-genetic-fault-downside-prenatal-genetic-testing/#ixzz1xIv5lGhp

From the article:

"Look no farther than the statistics -- 90% of unborn children who test positive for Down syndrome or cystic fibrosis are aborted."
"With this new genetic test giving parents and society the ability to map the genetic code of their unborn baby, it is no doubt that abortions will rise. Scared mothers and fathers will be told that aborting their baby is the compassionate choice and that you can always try again if you didn't want a girl with red hair, freckles, and a higher than normal chance of developing breast cancer."

Reflections of Life

As I sit as my desk in my home office working on transferring all the site albums over I have an inspiring moment I thought I would share. I am looking at all this amazing and miraculous children and I started to cry. I to this day am amazed at how each and everyone of them has the same facial expressions. I see Isabel in all of them. Today , I was reading a story and all I could do is think to myself that I can't wait to see Isabel at that age. Looking at this little boy with ailments similar to my daughter I have hope.

I now reflect on a time in life when hope was not there. A time when I couldn't buy Isabel clothes a size bigger than what she was wearing at the time. I would think to myself what if she never gets to wear them and they just hang in the closet taunting me. When I used to say to my husband I HOPE Isabel lives to see that age, now it's I CAN'T WAIT until Isabel is that age. The families thank me all the time for what I am doing, but now I must THANK YOU all!!! Thank you for being my inspiration, my strength, and my hope. While I may not have given birth to all your children, they are still like my very own. Most importantly, THANK YOU FOR MAKING ME A BETTER MOTHER. As we embark on this journey to growth , I felt the need to stop and reflect on the past. Here is to new beginnings and new dreams. May your dreams carry you faster than your mind can plan!!!

Hugs and Blessing

Vanessa

If nothing ever changed, there'd be no butterflies. ~Author Unknown

I saw this quote this morning and it must have been meant for me. Living With Trisomy 13 is making huge changes. As we grow into our role in the community as a Non-Profit organization we are still trying to find our  place. The small web based community we once were,we are no longer. LWT13 is now that caterpillar changing in to the butterfly. This journey is long and tedious but all for the greater good. As we look at life beyond the immediate we see a new horizon. We are going to change the way families are treated when dealing with these rare diagnoses and we are going to be their support system. I hope everyone will join us on this new journey as we evolve into a greater organization. I think Albert Einstein said it best “Life is like riding a bicycle. To keep your balance, you must keep moving.”  So, we will keep moving and I hope you move with us.


Hugs and Blessings
Vanessa

Mom speads the word about her daughter and trisomy

An amazing mom has come up with an AMAZING  way to spread awareness for Trisomy 13 &  18. In honor of her daughter Giuliana's 2nd Birthday Jill DelSignore had with the help of a major advertising agency 3 billboards displayed.

Check out her blog here  http://g-giftoflife.blogspot.ca/

Mental health hero: Overcoming loss, dealing with depression

Read more here

http://www.mlive.com/news/saginaw/index.ssf/2012/06/mental_health_hero.html

This is part one of a two part series about Steven Shapland, a physically and mentally disabled man who was honored by the Saginaw County Community Mental Health Authority last month.

BLUMFIELD TOWNSHIP, MI — Steven Shapland is a busy man.

Between working, building houses, volunteering and being a season ticket holder for the Saginaw Spirit, there isn't much free time in his life.

Each chromosome is responsible for hundreds of genes, which account for countless traits and characteristics. Although scientists have not been able to pinpoint the function of every chromosome, Shapland's mother said his trisomy 8 syndrome has manifested in number of ways.

Shapland's right arm, which is a few inches shorter than his left, contains extra bone and does not have full range of motion. He also has difficulty with the dexterity in his fingers and has extra cartilage in his ankles, among other things, Dinnan said.

"He's got a twofold thing, which makes him pretty rare," she said. "From the time he was young, the geneticist, the urologist, they all said they didn't have much to compare him to in the medical journals because he had two problems going on. And their prognosis was always, 'Wait and see, wait and see, wait and see.'"