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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 beautiful son was diagnosed with full Trisomy 18 when he was 20 weeks inside me. We never heard about Trisomy 18 and only given few weeks to decide wheater carry to term or termination. The Trisomy 18 Foundation and its forum provide us information and support we need during these difficulty times. We decided to carry the baby to term. Emmanuel was born at 32 weeks and 3 days; lived for 1 hour 41 minutes. We were sad but we are prepared. Thank you Trisomy 18 Foundation.

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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 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

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November 13, 2012

The Trisomy 18 Foundation is a wonderful organization to turn to in order to make sense of a sensless situation. Last November we lost our litle Willow Marie at 30 weeks gestation. I then carried her for another 8 weeks while her twin sister (Charley) grew strong and healthy (she does not have T18). The Trisomy 18 Foundation was place to turn to be with others who knew what I was going through. Friends and family were supportive, but could not understand. A year later, I still turn to the foundation.

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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 13, 2012

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November 13, 2012

In the beginning month of Jan.2012 we were informed that our baby boy was diagnosed with full Trisomy 18. He was still born on March 11.This was my second pregnany in a row with a T18 diagnosis. I was pregnant last year with a baby girl with full T18 also. We lost her at 16 weeks gestation. The Trisomy 18 foundation website helped me realize I was not alone through this journey. Having a baby diagnosed with this terrible condition is so devasting. When you are told by several doctors that it is such a rare condition and hospitals only see 3-5 T18 babies born every year and the treatment involved you have no were to turn except the internet. You can't pick up the phone and talk to someone in your area to help you through this, but I have met so many others that had to go through this same thing through T18. We need to help raise awareness for T18 and all the families affected by this. Thank you Trisomy 18 Foundation.

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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 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.

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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 10, 2012

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November 10, 2012

Our angel Alex was diagnosed with Trisomy 18 shortly before he passed away in utero at 18.5 weeks. We got the news at 12 weeks that his spine was not closing and that there were a few things not developing properly. He stopped growing at 12 weeks but still managed to fight to almost 19 weeks. This site has helped me through dealing with our journey of Trisomy 18. This Nov. 25 will be his 7 angel birthday! He now has 2 younger siblings Jasmine and Brandon who are as healthy as can be. I miss him everyday and think on how he is watching over us. I know he visitis his siblings often :o)

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Will you volunteer or donate to this organization?

Likely

How much of an impact do you think this organization has?

A lot

When was your last experience with this nonprofit?

2009

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