TRISOMY 18 FOUNDATION
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November 8, 2012
I found out that my son, baby to be due Jan 26 has T-18, I had no clue what it was or where to go just that the Doctors said I should abort an gave me no hope, I found the trisomy 18 website an was just blown away on what it says. It helped me understand what to expect an where to look for more resoucres an how to try an cope, I got to read others stories an know that I'm not alone, Since I reached out I have made a special friend who lost her baby girl this july an she has been so helpfull. I'm ver thankful this foundation is here to help an I will be going to confernces an helping others an relying on help from them. thanks Patricia Walker
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Will you volunteer or donate to this organization?
Definitely
How much of an impact do you think this organization has?
Life-changing
When was your last experience with this nonprofit?
2012
November 8, 2012
My eldest daughter's first-born was diagnosed with Trisomy. She visited with us for 11 days before she left to be held by Jesus. The heartbreak that followed was extremely painful, beyond words painful. Of course all of us were ignorant of what Trisomy was, how it affected the newborn, whose fault ... Yes, whose fault. What a terrible burden to bear. The Trisomy 18 Foundation, their website, and the knowledge that was shared allowed my daughter to move on (never forgetting) but moving towards a new life that was born a boy. He is perfectly normal and is now enjoying his first year in school. It's been 7 years since she visited ... she will never be forgotten, she will always have our hearts.
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Will you volunteer or donate to this organization?
Likely
How much of an impact do you think this organization has?
Life-changing
When was your last experience with this nonprofit?
2012
November 8, 2012
I absolutely love and support this organization! My sister in law just recently went thru the heartbreak of losing a child to Trisomy 18. I like so many others had never heard of Trisomy 18, but it changed our lives! I feel it is very important to get information out so people will know that it exsists and that there needs to be research done to help find a cure! My beautiful niece Ava Grace made it to almost 4 months, and I will never believe or accept the statement that she was not compatible with life! Thank you and keep up the good work!
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Will you volunteer or donate to this organization?
Definitely
How much of an impact do you think this organization has?
Life-changing
When was your last experience with this nonprofit?
2012
1 person found this review helpful
March 20, 2012
1 person found this review helpful
We were told early on that there could be something catastrophic with our son and it was at about 20 weeks that the diagnosis of Trisomy 18 was confirmed. The devastation of this diagnosis for our first, and much wanted and beloved, son is nearly impossible to convey. There were so many moments that I was not sure if I could survive the pain, both during and after our time with our son. The Trisomy 18 Foundation gave us a forum to express our love, our fears and our need for support. They linked us with parents who have come to be some of our closest and lifelong friends. They also provided us a permanent memorial place for our son, which has meant the world to us (http://www.trisomy18.org/goto/Oliver.Paul).
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How would you describe the help you got from this organization?
Life-changing
How likely are you to recommend this organization to a friend?
Definitely
How do you feel you were treated by this organization?
Very Well
When was your last experience with this nonprofit?
2012
March 20, 2012
i would love to share so much about my time carrying harry looking after him and losing him but it would take up so much space all i can say is that when harry was born i loved him with all my heart he was a fighter right till the end he passed away due to a hospital saying whats the point of helping him when he will die one day from his illness as its terminally ,my son lived for 3 1/2 months i miss him every second of each day he would have been 12 this year , so many hospitals in UK are not well known to understand Trisomy 18 we had to tell special care what this was and what they could and couldn't do i always share every thing about T18 to my friends and my Face book as so many need to know please keep up the good work
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Will you volunteer or donate to this organization?
Unsure
How much of an impact do you think this organization has?
Life-changing
When was your last experience with this nonprofit?
2012
2 people found this review helpful
January 4, 2012
2 people found this review helpful
My name is Kristina I have 2 very healthy children and one angel waiting for me in heaven! I went 38 wks without knowing anything was wrong with Noah. He was born on sept 25th 2011 with trisomy 18 which we did not know this until 4 days later. He lived for 13 days he fought so hard. This is the hardest thing my family and I have ever had to do. I questioned everything but I know he is better now. I wish there was a cure or more awareness. I never knew anything about t18 until I had Noah. I think about him all the time. I hope this finds someone. I hope this all gets better one day.
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Would you volunteer for this group again?
Definitely
For the time you spent, how much of an impact did you feel your work or activity had?
A lot
Did the organization use your time wisely?
Quite well
Would you recommend this group to a friend?
Definitely
When was your last experience with this nonprofit?
2011
4 people found this review helpful
December 15, 2011
4 people found this review helpful
I was 19 weeks pregnant with my daughter when I was told that she had a birth defect called Trisomy 18. I didn't even know what that was never mind what it would mean for my daughter's survival. Everyone around me told me not to go on the internet but that was the place I found the most information and the most compassion I have ever received. After the loss of my daughter the Trisomy 18 Foundation brought me together with the most amazing women I could have ever met. This foundation has helped me through the loss of my daughter. They were the ones who understood exactly how I felt. I didn't find this with family or friends, I found this in a community of grieving mothers who lost their children the same way. I don't know where I would be today without their support and guidance. Thank you to all those behind this wonderful organization!
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Would you volunteer for this group again?
Definitely
For the time you spent, how much of an impact did you feel your work or activity had?
Life-changing
Did the organization use your time wisely?
Very Well
Would you recommend this group to a friend?
Definitely
When was your last experience with this nonprofit?
2011
1 person found this review helpful
December 12, 2011
1 person found this review helpful
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.
The Great!
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.
More feedback...
How would you describe the help you got from this organization?
Life-changing
How likely are you to recommend this organization to a friend?
Definitely
How do you feel you were treated by this organization?
Very Well
When was your last experience with this nonprofit?
2011
How did you find this group?
Web search
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.
6 people found this review helpful
October 23, 2011
6 people found this review helpful
When we found out 5 years ago that one of our twins had Trisomy 18, and our other twin was healthy, it was the most lonely feeling I've ever had. We were immediately thrust into a heart wrenching horror that seemed to have no beginning and definitely no end other than a seeming end to our lives as we knew it. We had no idea what to do, how to think, how to fight for this child we had already come to love. Then I found the Trisomy 18 Foundation. I not only was able to find all the information on what Trisomy 18 WAS, I was able to turn this horror into something that was as beautiful as it could have been, and leave us, 5 years later, with memories so precious, and memories that have less pain. Day or night there were people on the message boards who could offer advice on any and everything, who were always willing to lend an ear, support, and friendship. They KNEW what we were going through. Some of those women I am friends with to this day. If there was a specific question, the staff...the Foundation itself was always there to assist, answer and aid in any way they could. I have learned that Trisomy 18 is the killer of dreams. Through the Trisomy 18 Foundation, I have learned that I AM my childs voice, I AM the keeper of her legacy, and I CAN plan her a life or death that matters, that is important, that will help me remember her with less pain. I am forever grateful for the Trisomy 18 Foundation.
The Great!
I've personally experienced the results of this organization in...
my daily life. Without the help and support I received, the birth of my twins would have been VERY different, and not in a good way.
Ways to make it better...
If I had to make changes to this organization, I would...
wish that every family experiencing a trisomy 18 challenge knew about them.
More feedback...
How would you describe the help you got from this organization?
Life-changing
How likely are you to recommend this organization to a friend?
Definitely
How do you feel you were treated by this organization?
Very Well
How did you find this group?
I came across it in a google search on Trisomy 18.
4 people found this review helpful
October 4, 2011
4 people found this review helpful
I am not much of a writer or a reader however this organization taught me the intense value of both. When I was pregnant and was first told that my baby had a chromosomal disorder, my genetic counselor shared this website with me. In my life I would have never thought that writing and reading would be a lifeline that could help bring me from a depth of despair to comfort and acceptance with lifelong friendships gained. The from the heart sharing of pain as well as medical experiences gave me the sense that I was eventually going to get through it. How can I give trisomy18.org the proper acclimates it deserves. With forever gratitude!
Much love,
Emerson's mom
The Great!
I've personally experienced the results of this organization in...
My daily life
Ways to make it better...
If I had to make changes to this organization, I would...
Give it more money to provide professional meetings