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November 13, 2012

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November 13, 2012

When our daughter was diagnosed with Trisomy 18 in the 20th week of our pregnancy we were devastated, confused and overwhelmed. The Trisomy 18 foundation was there for us with immediate support. I could not have made it through the rest of my pregnancy without having other moms to talk to who were going through the same thing. The odds of having a baby with Trisomy 18 are small and therefor it is hard to find people who can understand all the complex issues and emotions. The support group message boards enabled me to talk with people who had the same questions, concerns, hopes and fears as myself. I was went from feeling overwhelmed and helpless to feeling more in control and fully informed of the possibilities and choices I had as a parent. I would have never thought of making a birth plan for example, and asking for certain considerations from the maternity staff. I feel fortunate to have had 3 days with our daughter. The foundation also provides a place for extended family to learn more about the condition and to show support.

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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?

2011

November 13, 2012

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November 13, 2012

I have known this non-profit since it was just a spark in the CEO/Founder's eye. I found out in May of 2003 that the baby girl I was carrying had a genetic condition called Trisomy 18. Not knowing anything of this diagnosis, I searched the internet and came across Victoria and her e-list. I was also about the 50th person to ever join their website, just after they started. I can tell you without hesitation that I have no idea how I would have made it through my pregnancy, my daughter's short life, and eventually her passing without the information provided, knowledge offered, and support so freely given. In a world where people can be so self centered, the love and support of the ever-changing clientele at the website, the sharing of our stories, and often just knowing that there is someone else out there going through something similar (because we all know that every story is completely unique) can be life changing. I love that Victoria has turned the loss of her own precious child to this diagnosis into a force for research, support, information... When my daughter passed away, I asked for donations to this foundation in lieu of flowers, I believe so strongly in it's mission.

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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?

2011

November 13, 2012

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November 13, 2012

When i lost my son, at 24 weeks, i found myself in depth of pain that overwhelmed all around me, move on.... it left me feeling all alone, with no one i could turn to, i sought out information, something to ease the pain, more understanding for the why my baby, I found the Trisomy 18 Foundation on line, the first words were, we are sorry you have had to seek us out, i knew I had found someone who understood. At first, just reading the foundation gave me solace, I was normal, I was not the only person to feel this way, then from my first post, being offered support and comfort, from others who knew and understood my pain, thoughts and feelings, it ws the only place I felt safe to speak freely, without judgement, or criticism, surely you dont feel that bad?? The support continued with a subsequent pregnancy, offering yet again, my worries and fears were not unfounded, and all support I needed. I learnt about the thing called trisomy 18 that took my son , a better understanding of the condition, I learnt about prenatal testing, and choices that my own dr's did not offer, I gained life long friends with people who truly understand that the loss of our babies, never leaves you. I would recommend the Trisomy 18 Foundation for anyone on receiving the possible or definate diagnosis of Trisomy 18 in their child, I dread to think where I would be or how I would have coped without the foundation, I will be grateful forever.

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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

November 13, 2012

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November 13, 2012

When our daughter was diagnosed in utereo with trisomy 18 we were devastated. I truly felt that I would not survive. This was our first child. It should have been such a happy time. How do you carry a baby that doctors tell you will not survive their first year if they even survive the birth? While I was very lucky to have supportive doctors and loving family and friends it is not the same as talking to someone who has walked the same path. During my research I came across the Trisomy 18 Foundation. I could not have gotten through the rest of my pregnancy without the support of the men and women I met . They were there through my entire pregnancy and the eventual stillbirth of my daughter Lily. I have been fortunate enough to meet many of these men and women in person. I have had the privilege of meeting a few living trisomy 18 babies and sadly have mourned too many losses. I have been blessed with 2 subsequent children and while I am not in touch on a daily basis with the foundation anymore I know that these people saved me. Even now when I look back to 2003 I think "how did we survive that?" and I know the answer..The Trisomy 18 Foundation.

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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

November 13, 2012

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November 13, 2012

11 years ago, we were introduced to Trisomy 18 with the birth of our daughter. At that time, there were very few resources available to us for information about this chromosomal condition as well as available support groups. We searched the Internet and came across an electronic bulletin board format community discussing Trisomy 18. Postings were words of support for new parents touched by T18 as well as information as it became available. Sometimes, online chat sessions were initiated just so members could interact. As someone who tended to hide their emotions, the people that reached out to me to offer support was invaluable. What a long way the Trisomy 18 Foundation has come in the decade that followed! Trisomy18.org is a terrific resource, providing information and support as well as stories of other family journeys with T18. We were able to post our own story which helped us relive precious memories with our daughter and helped us through the grieving process. Every year, we remember her birthday and angel days and reference Trisomy18.org through Facebook to keep her memory alive in us and our friends. It really is a nice feeling knowing that her story is there for everyone to see and hopefully gain some encouragement and support. Victoria and the others at the Trisomy 18 Foundation have done a wonderful job making sure that anyone touched by Trisomy 18 has access to information and support! Thank you to the T18 team! --Philip Minami

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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

November 13, 2012

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November 13, 2012

I am a Grandmother and as a Grandmother was overjoyed when I learned that my daughter was expecting. In her fifth month the baby was diagnosed as Trisomy 18, we found out as much as we could about this diagnosis and found your website and read the stories that made us cry and gave us hope. We knew it would be a little girl and I prayed we would have her to love for awhile. When she was born the doctors told my daughter she could take her home to die, but because of the Trisomy 18 Foundation, my daughter knew she would fight for Tati's right to live, and she did. We had our beautiful little girl for 11 months, and though we wish we could have had her with us longer, those 11 months were precious, we loved her as much as we could and she gave us back love. After she passed my daughter again turned to the Foundation and recieved the support she needed from other parents who had lost their beautiful babies.

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How would you describe the help you got from this organization?

A lot

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Quite well

When was your last experience with this nonprofit?

2012

November 13, 2012

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November 13, 2012

My little girl was diagnosed with full Trisomy 18 in October of 2011. She was stillborn at 23 weeks. My family and I were frantically searching for resources to learn more about the horrible disorder. We found so much information on the Trisomy 18 Foundation website. The facebook page for the foundation has also been a lifesaver. I don't know what my family and I would have done or would do without it and the support the foundation provides. Thank you T18 foundation! We were able to learn more about T18 and connect with others who have experienced similar tragedy.

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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

November 13, 2012

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November 13, 2012

We were told that our daughter had full Trisomy18 in May of 2007. We delivered her just two weeks later. We didn't know what to do, or how we were going to heal after her passing just and hour after she was born. My husband had created a beautiful legacy page for our Christina while we were still in the hospital recovery from a c-section. In the days to come, he went back to work, but I was at home with two small children. I had no one to talk to beside those close to me, who had already heard every piece of my sad story. I found comfort in the beautiful kinds words of the friends, family and strangers that visited and signed Christina's legacy page. I always said that it was like reading hugs. The support and love that I felt and still feel each time I visit her page was the therapy that helped get me through some of my most difficult days. Thank you to The Trisomy 18 Foundation for being the place where so many turn for advice, support, love and comfort.

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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

November 13, 2012
1 person found this review helpful

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November 13, 2012
1 person found this review helpful

I was 5 months pregnant and my baby girl was diagnosed with trisomy 18. I had NO IDEA what that was. I went online and found the Trisomy 18 foundation. It gently explained to me what it was and what to expect. No one in my my personal life knew what trisomy 18 was. It was hard for them to understand what I was going through. I went on the forums and WHAT A BLESSING IT WAS. I didn't feel alone, everyone in the forum would give encouragement.I would be on the website anywhere from 5-10 times a day. It was so much help. When my daughter was born I would go to trisomy 18 website and get all the help I needed when it came to questions regarding care of her and improving her quality of life. When she passed away 11months later I was provided sympathy from fellow mother's and fathers who had gone through the same thing. Trisomy 18 foundation is a miracle and. Blessing from God.

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?

2012

November 8, 2012

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November 8, 2012

Trisomy 18 foundation was a God send. When I was pregnant with my first child I was told at 5 months he had Trisomy and when I recieved further testing it was confirmed he had Trisomy 18. I had no idea what this was and no outlet; but after reasearching this I stumbled upon this foundation's website. Not only could i talk to other woman that were going thru what I was going thru but I could also get advice and read other mother's stories. This foundation really helped me to learn that there were other answers beside aborting my child at 5 months. I truly love this site! With this disease being so hush-hush and not spoken about you can really get the feed back and support you need! From Marlina M.

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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?

2011

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