|
 Two 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 |
 Take 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
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 |
 Succasunna 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 |
 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...
|
|
|
 Please read this wonderful article on MSNBC about perinatal hospice and one family's journey through the birth of their child with trisomy 18.
When a baby is destined to die
Perinatal hospices support families with a terminal prenatal diagnosis |
|
 I would like to share with you one of the most wonderful and worthwhile experiences of my life: my little boy Daniel, who was prenatally diagnosed with trisomy 13 at 22 weeks gestation. My husband and I have experienced first-hand the many hard choices confronting those who receive a difficult prenatal diagnosis, and understand that in many cases, parents are asked to make these choices without accurate information or adequate emotional support. This needs to change. Please share this book with anyone you feel may benefit from reading it, and help to raise awareness of conditions like trisomy 13, and increase support and understanding for parents like us.
Download the book for free. (PDF 3.2MB)
You can also check out our new web site - Trisomy Oz Prenatal Support.
Kylie Sheffield (mum to Daniel 7.7.07 - 9.7.07) |
|
|
The Legacy of Rowan Johanna O'Flynn
December 17 - 18, 1999 It was the week before Christmas of 1999 when during a routine visit to my OB for a weekly checkup we discovered something was wrong. I was in the final month of my pregnancy with our first child. I was twenty-eight years old, my husband and I were newly married, and we were looking toward our future as though we were living a charmed life. |
|
Read more...
|
|
 An amazing video story about the life of a precious little boy named Eliot who was born with Trisomy 18. His father narrates this touching and incredible heartfelt story told in letters. Check out the video. |
|
|
