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.
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!!
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.
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
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.
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.
Two Years Worth Every Tear 
Despite prognosis, Simpsonville baby celebrates 1st birthday
Succasunna sixth graders raise funds for ill Andover toddler
