TRISOMY 18 FOUNDATION
December 12, 2011
Several years after having healthy twins through assisted reproduction we found ourselves expecting a third child. We knew there were risks so decided to see a specialist and have testing done. All early indications were that our daughter was growing well and healthy. It was not until 17 weeks that we were told that our child in-fact had Trisomy 18 and was given a grim prognosis for birth. We were devastated and also faced with how to let our children know that their little sister was going to leave us. The Trisomy 18 Foundation boards were a lifeline for me, holding me up when I could not stand on my own, guiding me when the medical profession had turned away, loving me and my child when I thought no one cared. All of the members, founders and volunteers make this site a valuable resource to all families faced with this disorder that often takes our child before we have a chance to know them. They allow parents to not only honor those precious angels from the moment they hear the heart-stopping words that their child may never take a first breath, but offer so much more information, resources and a sense of direction and purpose, and the support doesn't end when the child is gone. The Trisomy 18 Foundation is an oasis in a storm where parents can stop, breath and remember the important parts of life and living it and to build memories as a family, to embrace their unborn child, or to let them go, during this life changing event in their lives, but also allows those same parents the opportunity to give back to others in need as they are willing and comfortable doing with support and guidance. I feel my journey through loss is very different from what it might, no, would have been without this wonderful Foundation. Thank you to all who contribute to making it what it is.
I've personally experienced the results of this organization in...
Seeing the families who thought there was no hope realize that they were not alone and there were others who cared. They value the children and respect all of the families decisions without bias or judgement.
Ways to make it better...
If I had to make changes to this organization, I would...
Work to develop literature for the medical community to have available to any family given the diagnosis that an unborn or young child has a life-threatening genetic condition, with the Trisomy 18 Foundation website available to those facing the diagnosis.
How would you describe the help you got from this organization?
How likely are you to recommend this organization to a friend?
How do you feel you were treated by this organization?
When was your last experience with this nonprofit?
How did you find this group?
What, if any, change in your life has this group encouraged?
they have encouraged me to support others as I am able, to give back to parents and offer tangible information that is relevant and accurate. This group has given me the sense of worth-fulness and purpose I lost when I lost my child, and to fight for these precious, loved babies.
Client Served & Registered with the foundation.