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Monday, August 9, 2010

Web-Based Doctor Referral System for Trisomy Kids

Trisomy 18 and 13 are deemed 'incompatible with life' by the medical community. The statistics are staggering, with only 10% of pregnancies resulting in live births, and the majority of those dying by the median age of 2 weeks. Looks pretty bleak, huh?

But let's consider some FACTS the the statistics hide...
  • Many, if not most, of KNOWN trisomy 13/18 (and even 21 - Down's Syndrome) pregnancies are terminated because parents are told how terribly hard it will be to manage a child that is severely affected mentally and physically. These babies are never given a chance - they skew the statistics and make it look like lives that are not 'viable'.
  • Most trisomy 13/18 babies, when born, are put on hospice and sent home so that families can enjoy what little time they have with them. Some of this is because of the medical community's push to not extend the 'life' of these incompatible and undesirable children. Some is because parents trust and believe in the doctors and medical community to give us truthful information. Our own Rebekah was put on hospice out of the hospital, not because we didn't want to give her a chance, but because we believed the perpetuated lie that these children are 'incompatible'. It didn't take us long to figure out she was a fighter, and well worth fighting for!
  • And the rest of them? Yes, there is a percent that will not make it because of the combination of conditions they have, but many WOULD make it if the medical community would see value in their lives and afford them the same life-saving interventions that 'normal' children with anomalies are given without second thought. Many of my trisomy friend families have actually been denied life-saving operations for their children, even children that have proven they are compatible with life and have lived with their conditions past one year of age.
Out of all the trisomy 13/18 resources out there, there is no good system for helping parents find the medical resources (doctors and hospitals) willing to work with them to help these children. There is an exciting project out there designed to do just that! But it needs YOUR help to get the grant money necessary to fund its inception.

Even if you do not have a trisomy child, PLEASE vote everyday in August for this project. You can vote online once per day, and text once per day. Please help Rebekah and her friends by supporting efforts to bring REAL help to the living kids of trisomy 13/18! Let's work together to show the world that these children should not be labeled statistically as 'incompatible with life'.

They deserve a chance...
and YOUR vote!


Trisomy 13 and Trisomy 18, and related numbered Trisomy Variations.... Families, Friends, Missions of HOPE coming together to VOTE---Have you voted today? If you don't see this link on your Trisomy Support, resources, Please post and share. Bombard them.. We need to win this challenge. DAILY VOTING, by FACEBOOK VOTING and TEXT (Text 101529 to Pepsi at 73774). And if your posts get deleted, then you know this resource you frequent is NOT coming together with the TEAM of Trisomy Sites working together. Then you need to QUESTION WHY? Why would a support organization not want to help all of TRISOMY Families in this way... So keep your eyes open and be aware of those sites that are all SIGNIFICANT in coming together for the common good. Thanks for your support, it is via the SMALL and many creative sites that we have made the most SIGNIFICANT CHANGE in how OUR PRECIOUS CHILDREN ARE SEEN and TREATED! God Bless you ALL in your efforts for our KIDS.