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58 Reviews
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September 25, 2014

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September 25, 2014

8 Yrs ago I lost my first born daughter to T18. At the time I didn't know there were organizations out there. Instead of the doctors giving support they wanted to just turn me away. Despite what doctors wanted me to do I carried my baby girl to term but she decided she wanted to fly with the angels. With no support from doctors We had a lot of family support but they couldn't give us answers and even begin to understand our ordeal. But through out these years my loss has given me strength. I just barely recently found this organization and though it has been many years since my daughters passing I feel even more comfort in knowing that families can get the support they need. Thank for doing all the wonderful work you do for these families...
September 25, 2014

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September 25, 2014

The Trisomy 18 organization was a huge help to my family when our daughter, Alaina Joy, was diagnosed at 17 weeks gestation. Through the community I was able to gain knowledge of what may come of my daughter's life. I was able to make sound decisions as far as birth plans, and hospital care while keeping in mind that her life was going to be brief. I'm thankful for the Foundation for providing me with so much information to help make Alaina's 3 days on Earth the best 3 days in a very gut wrenching situation. We are forever family, as we are all connected by 1 extra chromosome. Thank you.
September 18, 2014

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September 18, 2014

I lost my baby girl to T18, a syndrome I'd never even heard of before. Through the foundation I gained a knowledge and respect for those affected by it. Not everyone's choices are the same but require respect and understanding. The foundation is there to help those in need of support, and recognition of the efforts of the volunteers and expert advice that is at hand should not go unnoticed. Wherever possible I would like to raise awareness and believe this award would be extremely beneficial in doing just that.
July 15, 2014

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July 15, 2014

Our daughter, Gina Prayer, was diagnosed with Trisomy 18 when I was 21 weeks pregnant, 11 years ago. The doctors didn't know much about the condition, and of course, neither did we. Trisomy 18 Foundation gave us lots of very useful information, advice and, most importantly, support. Throughout Gina's short life, the foundation (support group as it was then) continued to provide much needed support and sound advice on how to make her as comfortable as possible and how to deal with the grief while still caring for our beautiful little girl. Trisomy 18 Foundation was our life line throughout our daughter's life and through the pain of her death. We couldn't have survived it without the information, advice and help that we received from this most wonderful organisation.

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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?

2014

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 25, 2013
1 person found this review helpful

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September 25, 2013
1 person found this review helpful

I am the mother of a baby girl who was diagnosed with Trisomy 18. I had Paige Elizabeth Russell on June 11, 2013 via C-section and two days later found out she had been diagnosed with Trisomy 18. We took her off her ventilator on June 26, 2013 and lost her. The people with the Trisomy 18 Foundation have been amazing!! The little things they do, even just talking to you, helps me a lot. I've been dealing with Kristine Shaughnessy and I couldn't have asked for a better person to talk to. I highly recommend this foundation to anyone.

Ways to make it better...

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

Not a thing!

More feedback...

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?

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

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