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Hope for Trisomy 13 & 18
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Two Years Worth Every Tear

EPPCTwo Years Worth Every Tear  
By Rick Santorum 

Originally published in the The Philadelphia Inquirer on Publication Date: May 5, 2010  

"Incompatible with life." The doctor's words kept echoing in my head as I held my sobbing wife, Karen, just four days after the birth of our eighth child, Isabella Maria.

Read the full article

 
A Very Special Guest
Roller Dolls VideoTake a moment to enjoy this fabulous video taken when a beautiful little girl celebrated her birthday with the Denver Roller Dolls.  Happy Birthday Kami!!
 
Despite prognosis, Simpsonville baby celebrates 1st birthday

greenvilleonline.comDespite prognosis, Simpsonville baby celebrates 1st birthday
Infant suffers from rare chromosome disorder

By Anna Lee • Tribune-Times Writer • April 28, 2010

Susan Budd wanted a daughter. There were no dollhouses or tea parties growing up as the youngest of four brothers, so when Budd and her husband, Michael, decided to start a family, it was with a little girl in mind.

For nine years they tried to have a girl. They got four boys instead. At the age of 40, Budd finally got her wish — a baby girl and, with that, the pale pink bonnets and sweet eyelet dresses that she, the tomboy, had missed out on.

Read more at GreenvilleOnline.com

 
Elementary School kids Rally for Classmate with Trisomy 18
Active ImageSuccasunna sixth graders raise funds for ill Andover toddler
from: Mike Condon at Roxbury Register

ROXBURY TWP. – Most people likely have no idea what Trisomy 18 is.

But, if you’re a sixth grader at the American Christian School in Succasunna, you know exactly what the term means. And, in fact, you know someone personally who suffers from the rare illness.

The school’s sixth grade class, in fact, took on a service project to help a little girl with Trisomy 18 by raising money to purchase a sleep safety bed for her.

Read More at the Roxbury Register
 
Faces of Trisomy
Faces Of Trisomy by Jude Wolpert


March is Trisomy Awareness month. I photographed this series of portraits at the SOFT (Support for Families with Trisomy 18, 13 and Related Disorders) conference in Roanoke, Virginia during July 2009. I am trying to raise awareness that while only 10% of these kids survive their first year the ones that do live a rich life. Expectant parents are often told that Trisomy is incompatible with life and I am trying to share their unique beauty through these digital images. These children and young adults do not pose for photographs but can be captured being themselves, living in the moment. Most are non-verbal so I see it as an honor to help tell their stories visually.


 
Choosing Thomas
choosing thomas I'd like to let you know about a narrative project we're publishing about a family facing a Trisomy 13 diagnosis. The stories, beginning Sunday, Aug. 30, document the family's decision to keep their unborn son and their subsequent journey through perinatal hospice. I think it will have great interest to the readers of your website.
 
I teamed up with a photographer to follow Deidrea and T.K. Laux. We were with them step by step for more than three months after their unborn son was diagnosed with a terminal condition. Our intimate video and two-part narrative documents how the Lauxes' lives and their son's life were impacted by compassionate end-of-life care. It's a story highlighting the power of faith amid tragedy. We help readers explore how parents can find joy and celebrate the gift of a child's life, even as they endure the heartbreak of a life ending too soon.
Read more...
 
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