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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 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

September 22, 2013
1 person found this review helpful

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September 22, 2013
1 person found this review helpful

I found this page after the loss of my niece. I found comfort in seeing pictures of the other babies, knowing we are not alone in our loss. I enjoy reading about other families, sharing there joy and sadness. This page serves to educate people on something that you normally wouldn't hear of till it hits close to home. Great job! Keep it up!

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 22, 2013

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September 22, 2013

I have not had a positive experience with this organization and would certainly direct other families just learning of a trisomy diagnosis to more informative and supportive groups: SOFT, Hope for Trisomy, etc. The website and blog boards have not changed in the 4.5 years since i have been navigating in the world of trisomy and don't understand why. There are supportive parents out there that want to help whether a child is surviving and thriving or your angel has gone home too soon. Accurate information can empower a parent in crisis to make the best decision for their family and I do not feel that this foundation provides the most current or accurate information. They have a website that provides information for parents who have lost a child but very few to no resources for those that children survive!

Ways to make it better...

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

Emphasize accurate information; yes many of our children do not make it but there are babies surviving and thriving! It is so frustrating to see an organization that gets press paint suce a bleak picture that is not always the truth! This organization also receives thousands of dollars each year and it is never clear where the money goes and rarely are donations made to increasing awareness or for research

More feedback...

Was your donation impactful?

Unlikely

How likely is it that you would recommend that a friend donate to this group?

No

How likely are you to donate to this group again?

No

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

I cannot thank you enough, VIctoria, The Trisomy 18 Foundation and all the amazing Trisomy 18 parents for all of your support, and words of kindness and advice. My daughter was diagnosed with Trisomy 18, against the odds of what the doctors all told me, she did survive for almost 11 months... 11 months of my life that I will never forget and will treasure forever. The doctors had told me to take her home to die, when she 'surprised' them by surviving birth, but I chose to take her home to live. The Trisomy 18 foundation provides so much support while you are going through such a devastating period. They provide the facts, the real facts that yes many do not survive, but there are survivors.

More feedback...

Was your donation impactful?

Likely

How likely is it that you would recommend that a friend donate to this group?

Definitely

How likely are you to donate to this group again?

Definitely

When was your last experience with this nonprofit?

2013

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