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Trisomy 18 Foundation

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Nonprofit Overview

Causes: Birth Defects & Genetic Diseases, Birth Defects & Genetic Diseases Research, Down Syndrome, Health

Mission: T18F is dedicated to making Trisomy 18 a preventable and treatable condition and ensuring that all parents have access to compassionate and knowledgeable care that respects the humanity and potential of their child diagnosed with Trisomy 18.

Target demographics: families and their children impacted by Trisomy 18

Direct beneficiaries per year: over 10,000 families

Geographic areas served: United States, Canada, International

Programs: Trisomy 18 Patient Education, Legacy Pages Program, Peer Support Communities, Accelerating Research into Potential Therapies and Preventions, and Community Events and Awareness Days.

Community Stories

101 Stories from Volunteers, Donors & Supporters

5

Client Served

Rating: 5

The foundation was there for our family when we needed them the most - at diagnosis. The wealth of information and support resources gave us a handle of the Full Trisomy 18 diagnosis 7 years ago. The foundation continues to be a source of information and support for our family. What I find to be inspiring of The Trisomy 18 Foundation is their commitment to push and advocate for scientific research into Trisomy 18. As parents of a child with Full Trisomy 18 & also trained scientists, we greatly appreciate what the foundation stands for & the goals they fight for. The foundation is dedicated to push for much anticipated scientific breakthroughs in Trisomy 18 research. Three cheers to this wonderful professional & compassionate organization that keeps me hopeful that in the future, a Trisomy 18 diagnosis will have a better prognosis & quality of life.

4 Susan455

Donor

Rating: 4

In 2005 I found out my oldest son and wife were expecting our first Grandchild. This news still brings such joy to my heart with tears as they stream down. Even after all these years the Pain of her loss is still so unimaginable.
The day of her sonogram that brought the news she may have hydrocephalus of brain I read all I could on it. Found there were stents to be put in to drain the water after birth.
Next sonogram determined Trisomy 18. along with she was a Girl Alyssa

7 Jamye M.

Donor

Rating: 5

My niece was born with Trisomy 18 in 1993. I so wish an organization like this had been around back then. I have donated to this site. Just look and see what a great resource they are for the families .

7

General Member of the Public

Rating: 5

As a parent who was faced with a possible trisomy 18 diagnosis and having never heard of it before this foundation helped provide information, hope and comfort at a time of tremendous stress and sadness.

7

Client Served

Rating: 5

The Trisomy 18 Foundations gives hope to families blessed with these very special babies. As a grieving parent, I find comfort in the stories shared and support shown by this amazing organization.

7

Client Served

Rating: 5

When my wife was 22 weeks pregnant, our unborn son was diagnosed with Trisomy 18. At the time, we knew nothing about the disorder and we felt utterly alone. The Trisomy 18 Foundation and its contributors provided us a wealth of information and a glimmer of hope in a hopeless situation. We will forever be grateful for the positive role this community has had in our lives.

4

Professional with expertise in this field

Rating: 5

The Trisomy 18 Foundation provides a lifeline for parents faced with a new diagnosis of Trisomy 18. The executive director is knowledgeable, compassionate and unendingly dedicated to this important work.

6

General Member of the Public

Rating: 5

When my Brilyn was diagnosed with T18 at the tender age of 2 days old, we were devastated and felt so very, very alone. We searched for support and found Trisomy 18 Foundation. We were given the support and information we very much needed. It's been over 6 years, and I am so very thankful for the wonderful, unconditional support and tlc that our family has received.

4

Client Served

Rating: 5

The founder of this group has one of the biggest hearts!

4

General Member of the Public

Rating: 4

My daughter Alyssa was diagnosed with Trisomy 18, six years ago. We quickly looked for information and what we found on most sites was discouaging. The Trisomy 18 foundation provided us with hope. The information was accurate, encouraging, and clear. Alyssa has full Trisomy 18 and will celebrate her seventh birthday in two weeks. I am an advocate for my daughter and often direct medical professionals and others to the Trisomy 18 foundation site. It's important that medical providers and families to know that these babies can survive and lead meaningful lives. We have a blog wndrfllymde@blogspot.com , with a Trisomy 18 diagnosis there is still a world full of possibilities. Thank you Trisomy 18 foundation.

6

Client Served

Rating: 5

When my daughter was first diagnosed in utero with T18 I had no idea what it was. My husband and I quickly searched online for anything we could find to obtain more information. We came across this great organization and learned so much. The comforting thing was that there were many families at different stages and we spent hours pouring through their individual stories. I'm glad that this organization provides valuable information for families.

6

General Member of the Public

Rating: 5

The Trisomy 18 Foundation was established shortly after we lost our daughter to the disorder in 2003. I have followed their efforts for many years, and have often thought how much help such an organization would have been during our time with our daughter. Their work is important and life-changing!

5

Volunteer

Rating: 5

I must say your organization thus far helped me in many different, my Niece Ava Grace was diagnosed with Trisomy 18 and was born a sleeping Angel on February 10, 2014. Your organization helped in ways of how to give support through the grieving process , I didn't know much of the diagnosis you all provided so much information and helped me to be a support to our Angel Mommy which is my Baby Sister, living this experience with her changed me in so many ways and has changed our life's for ever. Every life counts, everyone deserves a chance. God bless every single person in your organization and May God Bless all of our Angel Parents. And thank you for answering God's calling and for saying yes to life.

6

Client Served

Rating: 5

T18 foundation is an amazing place to get support when facing such an overwhelming diagnosis, loss and struggle. After years of suffering a heartbreaking life changing event they still pick me up. They are a great team.

5

Volunteer

Rating: 5

I lost my daughter to trisomy 18 on November 25th 2009. I delivered her stillborn 3 days before her due date. The trisomy 18 foundation has helped me on so many levels. It's comforting to know that I'm not alone. You always think "that can't happen to me" , but it most definitely can. I wish more people knew about trisomy 18 and this foundation.

5

Client Served

Rating: 5

By far the most instrumental tool in a large bag of methods for my life long healing process.

Previous Stories
10

Client Served

Rating: 5

I am not much of a writer or a reader however this organization taught me the intense value of both. When I was pregnant and was first told that my baby had a chromosomal disorder, my genetic counselor shared this website with me. In my life I would have never thought that writing and reading would be a lifeline that could help bring me from a depth of despair to comfort and acceptance with lifelong friendships gained. The from the heart sharing of pain as well as medical experiences gave me the sense that I was eventually going to get through it. How can I give trisomy18.org the proper acclimates it deserves. With forever gratitude!
Much love,
Emerson's mom

13 Stephanie194

Client Served

Rating: 5

Words cannot begin to express how deeply grateful I am that I found the Trisomy18 Foundation. When I was 6 months pregnant we discovered that my identical twin girls both had trisomy 18. One twin had obvious physical abnormalities that would be incompatible with life if no surgical intervention was done (which no MD would do once the T18 diagnosis was given), and the other showed no physical problems in utero, which led us to want to continue the pregnancy and give our girls every possible chance at survival. The foundation, first and foremost, allowed me to connect with other families who had been through similar experiences, which was huge for me because I felt so alone with this diagnosis- I had never heard of Trisomy 18 before and neither did any of my friends or family members. This proved even more important for me after we lost our twins after birth because what helped me most with the grieving process, even now- 7 years later, was connecting with other parents who had been through this too. Even now I have awesome lifelong friendships with moms who have gone through my similar experience. We contact each other when we need support, and we've been able to share our lives and experiences with each other as we deal with life going on after the death of our children.
And I cannot say enough about the foundations president, Victoria Miller. The care and compassion she gave is in our darkest and scariest times made such a world of difference. She even called me personally and gave me tips and advice on how to advocate for my baby girls when they were born. She was absolutely amazing!
Although my girls didn't live long in this earth after they were born, the Trisomy 18 Foundation has been a life saver for me and I am thankful every day that myself and countless other families out there continue to have it as a resource.

7

Client Served

Rating: 5

After learning of our son Aden's T-18 diagnosis, we did a lot of research. This group of amazing people were an invaluable resource to our family. We are blessed by their wonderful support and information during this time. (Aden 5/1/08 full T18)

6 Regina16

Volunteer

Rating: 5

I want to thank the organization for helping me during the most wonderful and difficult time of my life. I was pregnant with twins and found out we were having a boy and a girl. Life couldn't be better. During the sonogram I noticed one babies head was bigger. We found out a week later that our little girl had a problem with her heart. We were told to abort or entire pregnancy or try to just abort Isabella. I was appalled by what the doctor said. After seeing a wonderful pediatric cardiologist she sent us for genetic testing. We learned the day before Thanksgiving that Isabella had trisomey 18. We knew nothing about this. Thanks to this organization my husband and I learned so much. Isabella and Joseph were born at 36 weeks. Isabella was first at 2 pounds 2 ounces and Joseph second at 4 pounds 3 ounces. Isabella survived 55 beautiful minutes and received her wings in her mommy and daddy arms. Joey is now 17 months old and doing great. He spent a short time in the NICU and has an angel always watching over him. My husband and I have had a hard time dealing with her loss. However thanks to everyone involved here we are not alone and are very grateful. Thank you, The Pizzonia family.

6

Client Served

Rating: 5

The Trisomy 18 Foundation was an invaluable resource for or family after our son's diagnosis at twenty-one weeks gestation. It gave us the support and courage to choose life for him. We felt prepared to support him during his brief life.

6 Mike149

Donor

Rating: 5

This is a great foundation .it helped us in many ways during the birth and death of our grand daughter and I will continue to support it no matter what.