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Please join us in supporting Michael Hennessey in his adventures as the Ironman for Kids . Michael Hennessey–husband, father, regular guy with a zeal for faith and life is racing Ironmans around the world for those without a voice! His plan is to race as many Ironmans that he can, scheduling permitted, across the globe — possibly a total of 18 in 2008 and 4 in 2009 for children living with trisomy. His organization aims to raise awareness and funds to benefit children's charities around the world! |
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 Register now to take part in the 5th Annual Day of Grace Golf Classic and Charity Auction. This year's event is on May 3rd, so please come to celebrate with us! The Day of Grace is excited to be hosted for the second year at the Jack Nicklaus Signature Course at Old Corkscrew Golf Club in Estero. Read more about the inspiration behind this event.
Come and join us for an afternoon of golf, followed by cocktails, a buffet dinner, and a live- and silent-auction. Registration is now open for golf and the after party, so even if you are not able to join us for golf, you can buy a ticket to the festivites.
Looking to help in other ways? Support Hope for Trisomy by becoming an event sponsor, by donating an item to our auction, or by making a financial contribution. Hope for Trisomy 13 and 18 is a 501(c)(3) nonprofit organization.
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Read more...
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 This article is posted on Living with Trisomy 13 and was originally published in the Hastings Center Report in 2003. It discusses the difficulties parents and doctors face when making decisions regarding their child who has been dignosed with a disorder that is termed fatal, like Trisomy 13 and 18, yet has survivors. |
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 A powerful article published by the New York Times on March 13, 2007 about the role of perinatal hospice and the support they provide to families expecting a child who has been diagnosed in utero with a fatal condition. In-depth article and video interview of two families of children facing a fatal diagnosis in utero. One of these babies is born alive, with Trisomy 18.
Article and Video: A Place to Turn when a Newborn is Fated to Die.
Go direct to Video |
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"I think this is an excellent tool for parents to increase the effective communication between them and their healthcare team. A definite must read!" Bess Raulerson, President of Hope for Trisomy. Felice E. Miller, Ph.D. is a Clinical/Consulting Psychologist in private practice and faculty of UCLA Schools of Medicine and Pepperdine University. As expert in the field of interpersonal and intercultural communication, Dr. Felice has shared with us some effective communication tips to gain control when navigating in the health care system. A Guide to Pediatric Procedures and Hospitalization |
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Noninitiation or Withdrawal of Intensive Care for High-Risk Newborns This is the most recent American Academy of Pediatrics statement about
noninitiation or withdrawal of intensive care for high-risk
newborns. Dr. Christine Nelson (Our Helpful Pediatric Hospitalist) states:
I would see it as a resource if someone was at a
standstill with their birthplan. It clearly states that the
parents should have the most important say when the outcome is
questionable, but it still leaves an open "place" when it comes
to deciding what is "futile." Not perfect, by any means, but
probably as good as a policy statement can be. Download the 3-page PDF document here: http://aappolicy.aappublications.org/cgi/reprint/pediatrics;119/2/401?eaf |
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