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Mollie Foster

Mollie Foster

"Wow.. she can sit unaided,...laughs, giggles, baby talks, loves throwing anything..." Mollie Ella Grace Foster, Trisomy 18, 8/12/2004, New Zealand Mollie Ella Grace.. our 7th child, born with full Trisomy 18.. is now 7.6 years old and will turn 8 on the 12th August...

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Stacy Lynn VanHerreweghe

Stacy Lynn VanHerreweghe

Stacy's Story   "Stacy loves every minute of her day and comes home laughing, smiling and singing..." Stacy Lynn VanHerreweghe,  Rochester, NY,  Trisomy 18,  5/21/1981   Update:  Stacy is now 34 years old. She is still enjoying life to the fullest. She...

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Palliative and Hospice Care

Palliative and Hospice Care

A brief description of Pediatric Palliative Care, Perinatal Palliative Care and Pediatric Hospice Care Pediatric Palliative Care  Palliative Care is often recommended for newborns with trisomy 18 or 13 who are able to be discharged from the hospital to home....

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Medicaid Waiver, SCHIP, SSI

Medicaid Waiver, SCHIP, SSI

Medicaid Waiver, SCHIP, SSI, Katie Beckett, TEFRA, etc. Medicaid Waivers Waivers are programs that states can use to test new or existing ways to deliver and pay for health care services in Medicaid and the State Children’s Health Insurance Program (SCHIP).  These...

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What Does “Rare” Disorder Mean?

What Does “Rare” Disorder Mean?

PROFESSIONAL VIEWPOINT:  Journal Club All of us at SOFT and the trisomy 18 community worldwide were saddened by the news of the two hospitalizations of Bella Santorum, daughter of Republican Presidential candidate, Rick Santorum, that appeared in various media sources...

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Medical Ethics and Decision Making

Medical Ethics and Decision Making

Presentation From the 2010 SOFT Conference in Sioux Falls Presenters: Terry Peterson-Henry, D. O. Pediatric Palliative Care and Ellie Schellinger, MA. Medical Ethicist Medicine, although it is grounded in the scientific method and dependent on changing technologies...

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