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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

47 Stories from Volunteers, Donors & Supporters

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.

3

Client Served

Rating: 5

This organization has been a blessing to me since the prenatal diagnosis of our little girl with T18. The information was factual yet uplifting, it helped my husband and I have hope and choose to carry to term. Our "Maggie" was born at 39 weeks gestation and was in our arms when she passed a short time later. The foundation gave us the courage and support to travel this scary road allowing us the opportunity to receive the blessings that came with traveling this road. Thank you to everyone!

3

Client Served

Rating: 5

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.

3

Client Served

Rating: 5

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!

3

Client Served

Rating: 5

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!

4 Jolee C.

Client Served

Rating: 5

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.

4

Client Served

Rating: 5

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.

3 BarbRa C.

Client Served

Rating: 5

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.

3 Tanya5

Client Served

Rating: 5

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.

Comments ( 1 )

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Foundation Staff 09/24/2013

Your suggestion about starting a chat room for parents is an interesting one we'll look into. The key to making this kind of feature work is having a good pool of volunteer moderators to host the chats at various times on various days. We'll work on that. And let us know if you'd be interested in volunteering to help with this.

Previous Stories
3

Client Served

Rating: 5

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.

3 Crystal30

Client Served

Rating: 5

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.

3 Theresa33

Client Served

Rating: 5

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.

3 Erika11

Client Served

Rating: 5

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.

2 Susan165

Client Served

Rating: 5

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.

2 Sherry21

Client Served

Rating: 5

I have known this non-profit since it was just a spark in the CEO/Founder's eye. I found out in May of 2003 that the baby girl I was carrying had a genetic condition called Trisomy 18. Not knowing anything of this diagnosis, I searched the internet and came across Victoria and her e-list. I was also about the 50th person to ever join their website, just after they started. I can tell you without hesitation that I have no idea how I would have made it through my pregnancy, my daughter's short life, and eventually her passing without the information provided, knowledge offered, and support so freely given. In a world where people can be so self centered, the love and support of the ever-changing clientele at the website, the sharing of our stories, and often just knowing that there is someone else out there going through something similar (because we all know that every story is completely unique) can be life changing. I love that Victoria has turned the loss of her own precious child to this diagnosis into a force for research, support, information... When my daughter passed away, I asked for donations to this foundation in lieu of flowers, I believe so strongly in it's mission.

2

Client Served

Rating: 5

When i lost my son, at 24 weeks, i found myself in depth of pain that overwhelmed all around me, move on.... it left me feeling all alone, with no one i could turn to, i sought out information, something to ease the pain, more understanding for the why my baby, I found the Trisomy 18 Foundation on line, the first words were, we are sorry you have had to seek us out, i knew I had found someone who understood. At first, just reading the foundation gave me solace, I was normal, I was not the only person to feel this way, then from my first post, being offered support and comfort, from others who knew and understood my pain, thoughts and feelings, it ws the only place I felt safe to speak freely, without judgement, or criticism, surely you dont feel that bad?? The support continued with a subsequent pregnancy, offering yet again, my worries and fears were not unfounded, and all support I needed. I learnt about the thing called trisomy 18 that took my son , a better understanding of the condition, I learnt about prenatal testing, and choices that my own dr's did not offer, I gained life long friends with people who truly understand that the loss of our babies, never leaves you. I would recommend the Trisomy 18 Foundation for anyone on receiving the possible or definate diagnosis of Trisomy 18 in their child, I dread to think where I would be or how I would have coped without the foundation, I will be grateful forever.

2

Client Served

Rating: 5

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.

2

Client Served

Rating: 5

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

1 Nancy83

Client Served

Rating: 4

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.

2 Amanda58

Client Served

Rating: 5

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.

2 Lisa180

Client Served

Rating: 5

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.

3 Monica27

Client Served

Rating: 5

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.