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45 Reviews
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September 24, 2013
1 person found this review helpful

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September 24, 2013
1 person found this review helpful

This organization helped keep me sane. Our son was diagnosed at 25 weeks in utero with Trisomy 18. Not knowing what that meant, and needing to have more information than what the doctor provided, I immediately turned to the web. It didn't take long to find the Trisomy 18 Foundation link. Once there, I spent hours reading the parent-friendly information about T18, as well as other families' stories, trying to make some sense of what was happening to our family. The support boards are a tremendous help, as you often feel very alone in an experience like this, and being able to share with others who understand your situation is incredibly soothing. Since February 2007, when our son was born and passed, the T18 website has been a great resource. Sharing his story via the Legacy page program helped with our healing.

We have also had excellent experiences with the staff at the T18 foundation. A fundraiser was held at my husband's workplace, and the staff at T18 were very helpful in sending us information to be distributed. Anytime we have wanted to do anything (e.g., fundraiser, family picnic, etc.), the staff at T18 are quick to show support. Our most recent experience, a photo session with RJ Lewis, in partnership with the T18 foundation, was also a healing experience. The more these stories are able to be shared, not only does it help the family, but will also hopefully help others who are going through similar experiences.

I think that the T18 Foundation does an excellent job at educating families, friends, and professionals. Their advocacy, on behalf of T18 (and other) families is needed and appreciated.

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?

2013

October 18, 2013

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October 18, 2013

When we found out in March of 2013 that our unborn daughter, Hannah, had Trisomy 18 we were - needless to say - devastated. I immediately took to the internet to find out more information and quickly landed on the website for the Trisomy 18 Foundation. I signed up for a forum and within 24 hours was personally contacted by a staff member, Kris Shaughnessy and offered links to so much valuable information and further support, including a private social media group for T18 parents to share openly and candidly, gain support and information and form relationships with other parents/families walking this same road. Kris as well as Victoria Miller, the founder, Executive Director and President of the Board regularly and frequently interact and communicate personally with the families in that group offering sincere support and helpful information and direction. The Trisomy 18 Foundation also is always quick to provide and distribute new, groundbreaking and/or encouraging news, resources, or any information that might be of help and interest to families affected by Trisomy 18.

Our daughter, Hannah, was stillborn at 31 weeks. Having had the chance to learn so much about Trisomy 18 and what to expect from both the organization and from other families in the support groups it created, maintains and facilitates made our darkest hour as bearable as it could be. I was so thankful to know that I had the support and resources of this organization available.

I am a firm believer that the work this organization does truly has the best interest of those it serves at heart and does everything possible to make this heartbreaking, difficult journey just a bit easier and manageable for the parents/families of T18 babies!

Ways to make it better...

If I had to make changes to this organization, I would...

Make it and it's work more well known!

More feedback...

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?

Very Well

When was your last experience with this nonprofit?

2013

September 30, 2013

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September 30, 2013

The first time my husband I heard of Trisomy 18 was when our daughter and her husband were told, after a routine blood test and then other tests, that their baby had Full Trisomy 18. Not knowing what that was, we turned to the WWW. We found Trisomy 18 Foundation. What a blessing they were and are. They provided answers to our questions and kind, caring support. Because of this wonderful organization, we found we were not alone. We've been able to read about other families who are dealing with this devastating condition. Our granddaughter, Elizabeth Ann Walsh was born into the arms of God, April 18, 2011.
Our hearts still ache at her loss, but I felt and still feel that her "being" needed to have a positive meaning. Earlier this year, I created a quilt in her memory and donated it to Trisomy 18 Foundation as a fundraiser. We have been working with Kristine Shaughnessy. We cannot thank her enough for all she has done/is doing to help and encourage us. Her thoughtful, kind, caring help goes above and beyond.
Trisomy 18 Foundation has featured our quilt "A Quilt for Elizabeth" on their FB page and web page. They have given us the support and encouragement we needed. They are the BEST!

Ways to make it better...

If I had to make changes to this organization, I would...

Not change a thing.

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?

2013

September 24, 2013
1 person found this review helpful

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September 24, 2013
1 person found this review helpful

After my son's Trisomy 18 diagnosis, my husband and I were devastated. We live in a small town and our doctor was very supportive, but there were not any other T18 families in our area that had carried their child to term. I had no one to get help from who had been there. The Trisomy 18 Foundation provided huge amounts of information, but more importantly for me, the chance to connect with other T18 families. I was able to get advice and ask questions in a way that I couldn't do face to face. I could cry and take an hour to post a question without feeling rushed because someone was waiting on me. I could read other posts and get information. I could get information that was too heartbreaking or upsetting without verbally having to say these things. The information I gained from the foundation was instrumental in guiding our decisions and planning for our son. I was able to get advice from other moms who had been where I was currently at. Even though my son is no longer with us, I still use the forum to offer support to others. The Trisomy 18 Foundation provides such a wonderful service to so many who desperately need help during a heart wrenching time in their lives.

Ways to make it better...

If I had to make changes to this organization, I would...

Make it more widely known about! It's a great organization!

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?

2013

September 22, 2013
1 person found this review helpful

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September 22, 2013
1 person found this review helpful

My husband and I loss our daughter while I was 6 months pregnant to T18. I felt like my heart had been ripped out of my chest. I felt alone, even though I was married and had the support if family and friends. This organization helped me to reach out to others that had gone through the same thing or were about to. Talking with the other members helped me to not feel crazy and alone and helped me to heal. I did also help with some translations in Spanish for women trying to reach out from Spanish speaking countries. I think that helped me even more knowing I was actually helping others in some way.

Ways to make it better...

If I had to make changes to this organization, I would...

Noting

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?

2009

September 22, 2013
1 person found this review helpful

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1 previous review
November 13, 2012

I found out that my sweet baby girl had trisomy 18 at 20 weeks gestation. The help I received from the Trisomy 18 Foundation was invaluable. I read everything technical and scientific that I could g... more

September 22, 2013
1 person found this review helpful

Durring my pregnancy and then the loss of my beautiful baby girl the Trisomy 18 Foundation was a huge source of comfort. Reading the stories of other families made our family feel less alone in our sorrow.

Ways to make it better...

If I had to make changes to this organization, I would...

start a chat room for parents to talk with other parents in real time.

More feedback...

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?

2013

November 13, 2012
1 person found this review helpful

I found out that my sweet baby girl had trisomy 18 at 20 weeks gestation. The help I received from the Trisomy 18 Foundation was invaluable. I read everything technical and scientific that I could get my hands on but there is no substitute for the heartfelt words shared by loving parents in the Legacy Pages of the Trisomy 18 Foundation's website. It was so comforting to know that there are other parents out there who know your heartache and struggles. Then after the passing of my beautiful baby girl to be able to publicly share her story and my feelings for her was an incredibly therapeutic experience but also something that I would not have done anywhere but in a supportive an loving environment like the one provided by the Trisomy 18 Foundation.

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

September 21, 2013
1 person found this review helpful

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September 21, 2013
1 person found this review helpful

My father was diagnosed with pancreatic cancer and we wanted to have an ultrasound done so we could show him his grandson. Rather than having happy news, we were told that something was wrong with him and were sent to have further test. I had to cancel the day we were to have our test because my dad passed away that morning. We had to wait two more weeks to be rescheduled and when we finally did make it the genetic Dr he informed us our baby had Trisomy 18 and we should abort. We left his office in a fog and drove straight to my OB and he said he would support our decision to carry our baby full term. He suggested I go to your website for research and support in making an informed decision. Not only did your website help to inform, but it allowed me the support of others. We felt alone and lost, not fully understanding what to expect or do. Even though we could not change our outcome and we carried him 37 weeks and he lived 21 minutes, I felt more in control knowing i had a better understanding of what we were about to face. We would not change our decision to carry him full term and are grateful that we had your website to give us support and the information needed. My journey did not end there as it is my hope that more information is known about the cause of trisomy 18 and the support continues....I want to do that for my baby Thomas and all of the other parents that travel this road..they are not alone.

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?

2013

September 21, 2013
1 person found this review helpful

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September 21, 2013
1 person found this review helpful

In the year 2005 when our son Elijah was born with Trisomy 18, the Trisomy 18 Foundation was virtually the only organization that I could find specifically to help parents and families of trisomy babies and children. All the other references online coldly and scientifically spoke about this disorder. Other then help from The Lord , this was the only place I could read about other families and write about our family's experience with Elijah. It was definitely beneficial in my healing process and may God bless you and your endeavors forthcoming.

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?

2010

September 21, 2013
1 person found this review helpful

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September 21, 2013
1 person found this review helpful

The Trisomy 18 foundation is the place where went when my world spun out of control after receiving a prenatal diagnosis of full Trisomy 18 during my first pregnancy. I was shattered and had more questions than I knew what to do with. This foundation led me to all the facts I needed to know. It led me to communities of families that knew what I was going through. I made friends that have impacted my life forever. They helped me write a birth plan after debating comfort measures versus life saving procedures. They helped me find the best doctors to work with. And they helped me with the tools I needed to facilitate the grief I have been enduring since the day my daughter passed away. Thanks to the Trisomy 18 Foundation, I wasn't alone in my journey. I have pictures, memories and friends to last the rest of my life. And my daughter, Alessandra, changed my life forever. I'm so thankful to the foundation for doing what they do. It made all the difference in my life.

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 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.

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

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