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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

120 Stories from Volunteers, Donors & Supporters

2 Kristy R.

Client Served

Rating: 5

Paige Elizabeth came into our world on June 11, 2013. There was no sign that anything was wrong until she was born. The next day, we found out she had Trisomy 18. We had no clue what that was, but immediately started researching. That's when we found the Trisomy 18 Foundation. Paige passed away on June 26, 2013, but I continued to learn. My family and I couldn't have made it through the absolute worst time of our lives without this foundation. They never hesitated to help with anything I needed - whether it was clarification, questions, or just finding someone to talk to. They sent us an ornament and gave families a place to share their stories. I've learned so much and even created my own organization to raise funds for the Trisomy 18 Foundation. It's been my mission to bring awareness and raise funds so that maybe one day, a family doesn't have to go through the same devastation. The only way that can happen is awareness, donors and lots of support. Also, the fact that it's been 7 years since Paige's passing and one of the volunteers knew exactly who my daughter was without me saying shows how much they truly care. If any organization deserves this, it's them.

Melanie M.

Client Served

Rating: 5

In February 2008, our first child was diagnosed with Trisomy 18. We both work in Healthcare though neither of us had heard of Trisomy 18. There was little information out there about Trisomy 18. I was desperately looking for information on this relatively rare condition. I needed to know more about what to expect during the rest of my pregnancy, I needed to know how to answer the many questions from family and friends and more importantly, I needed to know more of how and what to plan for our sweet baby. I came across the Trisomy 18 Foundation soon after we received the results that our unborn baby was diagnosed with full Trisomy 18. I am so thankful for this wonderful group! The executive director was very involved on the site. The other members of this group were all at various stages during the Trisomy 18 journey. Some had already experienced the birth of their T-18 baby, some were currently pregnant, while others had just been given the diagnosis. This was and continues to be a wonderful group of people who are willing to share their story of having a child with Trisomy 18. They are all warm and welcoming, non-judgmental and willing to answer any questions.
We were so upset and heartbroken after receiving this diagnosis. This Trisomy 18 Foundation was and continues to be a blessing to us. The many members helped us along in all of the various stages of this journey. Twelve years later, I am still in contact with a few members that I met on this site. What makes this group special is that we can all truly understand each other. There is something about having someone who has gone through a similar experience and who knows and understands what you have been through that helps you to not feel alone. I am so thankful I had this group to help me during one of the most difficult times in my life.

Client Served

Rating: 5

My son was diagnosed with Trisomy 18 in August 2006. This foundation has been a godsend over the last 14 years. I had a conversation with the founder a few months after my son passed, and she was unbelievably comforting and kind to me during a time when the rest of the world was cold and unkind.

2

General Member of the Public

Rating: 5

A wonderful group of people that are dedicated to patient advocacy in all it’s forms. Their professionalism is only surpassed by the genuine care and compassion for all the people in the trisomy 18 community. My daughter has full trisomy 18 and she turned 10 years old this summer. I continue to support the trisomy 18 foundation because they give me hope that through science, babies born with trisomy 18 will have a much better chance of survival and improved quality of life.

1

Client Served

Rating: 5

My daughter is Full trisomy 18, is 18mos old. We were preparing for the 2019 flu season and we were told it was absolutely vital to Faiths health that she receive the RSV shot. Her insurance was denying her completely. So I reached out for help. Trisomy 18 Foundation gave me some guidance and helpful tips so that I was finally able to get the RSV injection for Faith throughout the RSV season. For that I am grateful. Thank you!

1 Nita C.

Client Served

Rating: 5

At 12 weeks pregnant, I went for the usual tests that every expectant mum has and was thrown into darkness when it came back with a high reading for Trisomy 18, i was so scared and lost. I started looking for information and came across trisomy 18 foundation on facebook. I read other families stories and felt the heartache and strength these parents were going through. I decided to share my story with the group, the support I received was amazing and just what I needed.
After an agonising wait my blood test came back all clear and I gave birth to a beautiful healthy baby boy 2 weeks ago.
If it wasn't for the trisomy 18 foundation I would have been a nervous wreck. They helped me to understand the condition and that although scary it is doable. I can't thank them enough .

2 Kristy R.

Client Served

Rating: 5

Paige Elizabeth came into our world on June 11, 2013. There was no sign that anything was wrong until she was born. The next day, we found out she had Trisomy 18. We had no clue what that was, but immediately started researching. That's when we found the Trisomy 18 Foundation. Paige passed away on June 26, 2013, but I continued to learn. My family and I couldn't have made it through the absolute worst time of our lives without this foundation. They never hesitated to help with anything I needed - whether it was clarification, questions, or just finding someone to talk to. They sent us an ornament and gave families a place to share their stories.
I've learned so much and even created my own organization to raise funds for the Trisomy 18 Foundation. It's been my mission to bring awareness and raise funds so that maybe one day, a family doesn't have to go through the same devastation. The only way that can happen is awareness, donors and lots of support.
Also, the fact that it's been 7 years since Paige's passing and one of the volunteers knew exactly who my daughter was without me saying shows how much they truly care.
If any organization deserves this, it's them.

Previous Stories
4

General Member of the Public

Rating: 5

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.

1 Aimee M.2

Client Served

Rating: 5

For someone who has lost a child due to T18 and didn’t have a clue what this was before hand. This foundation has been everything to me and my husband! So caring and kind! The random reach outs to us making sure we are ok and knowing we are not alone helps me get thru my bad days!!

1

Donor

Rating: 5

This foundation has been amazing to us. We immediately got messages from them as soon as they found out my granddaughter had trisomy 18. I’ve received sweet messages and so has my daughter. We lost our Harper on June 11 to trisomy 18.

2 Charles B.4

Donor

Rating: 5

Earlier this spring my wife and I found out that our unborn son at Trisomy18. We had never heard of it and all we knew was we were most likely going to lose our son. We found this foundation and reached out and Kris and her team were right there to help with information for any questions we had. We unfortunately lost our son at 15 weeks and just a few days letter we had a hand written note from Kris with their love and support. They have been a huge help and we want to do anything to help get out more information around Trisomy18.

1

Donor

Rating: 5

Having the Facebook page support group has proven to be very beneficial to a lot of families. Mainly, those who have lost a child, or, experiencing grim hope for a future for their bundles of joy. It allows families to reach out to others that have gone through(or experiencing) the same thing. What better way to help with healing. My granddaughter, A’Shana, has Partial Trisomy 18. She’s 7 years old. She has a lot of issues but stable for her condition. In November 2014, my grandson, her brother, A’Meir, was born sleeping. This was a difficult time for me. Being able to read other people’s posts, let me know that I wasn’t alone. I realize that some see Trisomy information as outdated. I disagree. I feel that it’s because there’s not enough money for the proper research to be done. This is why I try to take up donations(started last year), and send to the foundation. It may or may not help A’Shana, but, prayerfully, one day, thousands of children will be saved.

Review from Guidestar

1

Client Served

Rating: 1

The foundation is a complete scam. Their goal is to eradicate trisomy 18 by encouraging early detection and termination. They give outdated statistics, and do not allow anyone to share stories of hope on their platforms. I was asked not to comment any updates because my child is doing "too well." They use deaths as a way to solicit donations...which then go right into their own wallets. They pay themselves a ridiculous wage, and only use a tiny percentage for helping families. They lurk on the SOFT pages and if anyone mentions anything about the foundation, they are immediately blocked from the groups. It's disgusting behavior. They aren't there to support you. They only want you to terminate and then donate to them. If you are looking for real resources, check out SOFT.

FYI, with interventions, a baby born with full trisomy 18 has a 60% chance of living to at least 1 year. There is hope.

Review from Guidestar

1

General Member of the Public

Rating: 5

A wonderful organization! The amount of caring is amazing for people who really need their support.
Thank you for all that you do!
Debra Finch

1 Laura Morrill J.

General Member of the Public

Rating: 5

When my baby passed there was little support available. This group provides healing support for many families dealing with this silent condition.

1 Frank E R.

General Member of the Public

Rating: 5

After I lost my daughter 3 days after being born because of trisomy 18 this foundation was there for me with encouraging words. i’ve never seen any negativity from anyone from this group. The other members of this group is always there to provide support when it is needed. I don’t know where I would of been with out them. Thank you for being there for us!

1 Corey A G.

Client Served

Rating: 5

They have been an absolute help with losing my daughter Harlow last year. Because of them I didn't feel so alone.

1 Veronica Anderson S.

Donor

Rating: 5

In February 2018 we found out my daughter Violet had Trisomy 18. I was about 18 weeks pregnant and our world changed with her diagnosis. We continued the pregnancy and did research on what this meant for our daughter and family. The Trisomy 18 Foundation was one of the first resources we found and really helped us navigate this new territory we had never really heard of. And they continue to be a resource for us today. I am very grateful for them. My sweet Violet was full term and lived 8 days but will live on forever in our hearts

2

General Member of the Public

Rating: 1

Very discouraging and not a foundation I wanted any part of as a pregnant mother of a t18 baby who is now 3 years old. SOFT organization is legit the best and does the most good.

Comments ( 1 )

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Foundation Staff 10/16/2019

We are sorry that you chose to believe unsubstantiated rumors on social media about T18F without ever talking to anybody at the Foundation. We have no record of any contact with you and certainly not as a volunteer. We are pleased that you found the support you sought through the SOFT organization. They are a good group that we have had a collegial relationship with since our beginnings in 2003. I'm sure they would appreciate your donations and good review. But I'm also sure they wouldn't appreciate you mentioning their organization in this context to spread disinformation about a sister nonprofit working to improve care for all trisomy18-impacted families and their children. Trying to drag others down instead of standing together to lift all families up does nothing positive in making real change for Trisomy 18 families.

Review from Guidestar

2 Caitlin N.1

Volunteer

Rating: 1

Give very outdated statistics and does not give help. Doesn't show kids that grow older on their site. Try SOFT instead

Comments ( 1 )

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Foundation Staff 10/16/2019

we are sorry that you chose to believe unsubstantiated rumors on social media without ever talking to anybody at the Foundation. We have no record of any contact with you and certainly not as a volunteer. We are pleased that you found the support you sought through the SOFT organization. They are a good group that we have had a collegial relationship with since our beginnings in 2003. I'm sure they would appreciate your donations and good review. But I'm also sure they wouldn't appreciate you mentioning their organization in this context to spread disinformation about a sister nonprofit working to improve care for all trisomy18-impacted families and their children.

Review from Guidestar

2 Patricia V. T.

Client Served

Rating: 1

This is a whole SCAM I learnt that very early on in my T18 pregnancy. I am so grateful that I avoided the entire foundation after learning how horrible the founder was. My family has happily donated money to SOFT who actually helps family with these children. The founder of this group could care less if our babies live or not. She didn’t even want her own trisomy child to live.

Comments ( 1 )

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Foundation Staff 08/29/2019

Patricia Clough, we are sorry that you chose to believe unsubstantiated rumors on social media without ever talking to anybody at the Foundation. We have no record of any contact with you. We are pleased that you found the support you sought through the SOFT organization. They are a good group that we have had a collegial relationship with since our beginnings in 2003. I'm sure they appreciate your donations. And I'm sure they wouldn't appreciate you mentioning their organization in this context. Your need to use this space to make cruel comments about our Founder's personal relationship with her own baby son, Isaac who lived for 11 days after being born with Trisomy 18 in 2001, is beyond us. In our community, we don't have a culture where that kind of hateful talk is allowed. Fortunately, your point of view is a very small minority confined to Facebook that doesn't reflect the 100s of other reviews here by parents and their families who do value our programs and services.

Review from Guidestar

1 Christine L.4

Client Served

Rating: 5

We got connected with the Trisomy 18 foundation after the loss of our baby girl. The support we have received from the foundation and T18 community has been so comforting through this tragedy. We can only hope that continued support of the foundation will help other families and babies in their time of need. We pray for advances in research and treatment for Trisomy 18.

4

Client Served

Rating: 2

I had a negative experience with this organization. With early medical intervention and therapies, many more children with T18 are living longer, healthier lives than in previous years, and a T18 diagnosis isn't as hopeless as it used to be. Unfortunately, most of the parents whose children are thriving are kicked out of the Trisomy Foundation groups, as I was. After I was removed, I emailed the founder with my concerns. She scheduled a phone meeting with me, then cancelled. I appreciate the support the Foundation offers to grieving parents, but my issue with this organization is that it pays to dominate the search engines, and continues to portray T18 in a hopeless light.

Comments ( 1 )

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Foundation Staff 06/18/2019

When parents participate in the Foundation's online groups with motives not to answer the question asked by a fellow parent with their own experience but instead to share what they think God wants this parent to do and refer them to other groups in surreptitiously it can come across as hurtful and even shaming to those who don't share their same religious beliefs. Trisomy 18 diagnoses affect parents of all faiths and no faiths. We ALL love our dreamed-for child regardless of the medical decisions we must face making on behalf of our child. We ask group members avoid comments that "should, shame, stigmatize or suggest shunning" other parents in the midst of the most difficult, heartbreaking medical decisions of their lives and those posters ignore our requests after repeated warnings, we are left no option but to remove them from the group. In addition, to correct the poster's claim -- T18F has never and will never use Google paid advertising for search engine ranking.

Review from Guidestar

4

Client Served

Rating: 5

Here is a community you wish you would never be a part of, but once you become a part, you are so grateful for it. Victoria has turned her personal loss into a source of support for families around the world. When you find out your child has T18, you feel lost. T18F helps you find answers and hope. I am grateful for Victoria Miller and T18F.

5

Professional with expertise in this field

Rating: 5

I have experienced first hand how the Trisomy 18 Foundation has made a positive impact in families lives. As a genetic counselor, one of my roles is to connect families with resources, such as the Trisomy 18 Foundation, where they can go to get good, accurate information and support through such a difficult and unexpected time in their lives. It is invaluable to connect with families who have gone through a similar experience and be able to share. The Trisomy 18 Foundation also supports very important research involving the care and management of those with Trisomy 18. Overall, this organization does amazing things - both for families and for the scientific community.

5

Professional with expertise in this field

Rating: 5

Victoria and her staff are wonderful. The Foundation does so many things for families and children affected by Trisomy 18. It's wonderful to see an organization that truly cares about helping. If you are looking for resources related to Trisomy 18 I truly recommend the Trisomy 18 Foundation.

8 Michele L.1

Professional with expertise in this field

Rating: 5

As a federal employee, I found this organization represented their constituents with passion. They are knowledgeable about policies and science that concern their constituents. Their advocacy is based on in-depth knowledge about Trisomy 18, its potential treatments and the needs of individuals and families affected by this condition

8 Jennie D.1

Client Served

Rating: 5

The Trisomy 18 Foundation has helped thousands of families for over 12 years now. The reach of the program is unbelievable and the comfort it provides for its families is unparalleled. I was blessed to have its founder, Victoria Miller, by my side when I lost my son 15 years ago. I don't know how I would have made it through those dark early days without the group of women I found within this foundation. I'm blessed to have them in my life and the world is blessed to have Victoria devoting her life to helping T18 families. A piece of my heart will always belong to the Trisomy 18 Foundation.

8

Professional with expertise in this field

Rating: 5

Trisomy 18 Foundation supports families and stays focused on research progress.

8

Client Served

Rating: 5

Victoria and the trisomy 18 foundation has been wonderful to me and my family. Not only do they provide amazing resources but they are so caring, even sent us a card after our sons death. Their website was our 1 # resource when we first found out about our sons diagnosis and all through the rest our pregnancy

8

Client Served

Rating: 5

I don't know how I would have handled the diagnosis of my daughter Alexa without the Trisomy 18 Foundation team and their online support. My first pregnancy 6 years ago, I was blessed with twin girls, Alexa and Sophia . We found out half-way through our pregnancy that one of our beautiful babies had Trisomy 18 and as you can imagine, we were devastated. Before then I had never heard of such a condition and so I searched the internet and came upon the Trisomy 18 Foundation's website which taught me so much. I was then contacted by an admin and then also paired with a volunteer who happened to be another mom that had gone through exactly what I was going through and helped me every step of the way. It's an amazing network of other families that are supportive and a foundation leader that fights for families and children with Trisomy 18 every day. I am forever grateful.

7

Client Served

Rating: 5

This has been such a wonderful and helpful organization. My daughter was diagnosed in utero with T18. With the internet being what it is, it's scary to go and search for T18 and not get all the facts straight. I had family that would tell me something that wasn't true because they found it on the internet. This page helped us with dealing with the facts and finding out more about this disorder. It has been a wonderful support since my daughters stillbirth. I find it a great resource and it helps us connect to others that are going through what we went through.

7 Mary W.2

Client Served

Rating: 5

We felt like we had nowhere to turn when our precious Aaron was diagnosed with T18, then we found the Trisomy 18 Foundation. We learned so much and found that we weren’t alone. It helped so much to experience the love and support they provide and to be able to connect with others who had gone through what we were going through. My daughter and son-in-law have started a foundation that raises money for several organizations including the T18 Foundation. This has given them a way to celebrate Aaron’s life and encourage others to develop GRIT in response to difficult situations. Thank you Trisomy 18 Foundation. #AaronStrong

7

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

General Member of the Public

Rating: 1

I tried joining the trisomy 18 foundation page after learning about my daughters FT18 diagnosis at 22 weeks pregnant. After answering questions and providing proof that I indeed had a trisomy 18 diagnosis. The administrator of the page who is also the highest level of of board staff for the actual foundation denied me and said I wasn't a good fit for the group and that I should find another group. Who says that? How is that the decision of anyone but myself! It's sickening that a young mother going through this would be denied based on one awful person! This foundation is a joke!

Review from Guidestar

2

Client Served

Rating: 1

This is not the organization for you if you choose LIFE for your baby. If you want information to support your decision to carry to term and provide interventions for your child, look for another organization, any organization but Trisomy 18 Foundation.

Review from Guidestar

5

General Member of the Public

Rating: 4

We had never heard of T18 until our sweet baby boy Gage was diagnosed. He was a real fighter. We never gave up hope despite the diagnosis. We were blessed with our angel for 17 days and will be blessed forevermore. Online resources such as this remind us that we aren't alone.

9

General Member of the Public

Rating: 5

The Trisomy 18 Foundation provides the information families need during a time of stress and fear and supports all choices with empathy and compassion. The Foundation creates a respectful community space for sharing and supporting one another while publicly advocating for families to medical/healthcare professionals.

7

General Member of the Public

Rating: 5

This Foundation is amazing. They are focused on family support and support all decisions regarding care.

8

General Member of the Public

Rating: 5

The Trisomy 18 Foundation provides amazing support to families affected by this condition. When we lost our son in 2009, we felt lost. There is so little information or support available on this condition and much of what is available is biased or misleading. Luckily, we found this organization, which helps all parents going through this terrible ordeal.

8 Vicki71

General Member of the Public

Rating: 5

My grandson, Nehemiah was born with Trisomy 18,on December 31, 2013. At the age of 56, I had never heard of it. Through our tears and prayers he lived 3 days. This organization helped so much in this heartbreaking situation. I still pray for a cure every day so babies can live. Great non-profit. Now, let's find a cure.




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.

7

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 [email protected] , 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.

5

Client Served

Rating: 5

In 2005 I got the devastating news that the child I was carrying had T18. I had never heard of this, nor had any of my friends or family members. The doctor I had was nice, but did not provide helpful information on how to prepare for what was to come. It was a devastating time, and the only place available for me to turn to for help was the Trisomy 18 Foundation. Though it was the most difficult time in my life, I'm so thankful I had a safe, understanding and compassionate place to turn.

4

General Member of the Public

Rating: 5

Our son was born with Trisomy 18, 36 years ago. Back then there was no "foundation", no real place for new parents to find out much of anything. Back then, we were told it doesn't usually happen to young mothers (I was 23), that the babies were usually girls (our's was a boy), that they are usually miscarried (not), and that they usually didn't make it past the day they were born (our son lived 5 months 10 days). We were the first parents to be taught how to gavage feed our baby at the Foothills Hospital in Calgary Alberta. We knew nothing. To have a Foundation available for parents of children born with special characteristics is more invaluable than you know. Unless you have been a parent who walked around in a daze because there was virtually no support system, you have no idea how critical it is to have a Foundation that supports you, educates you, and comforts you when needed. The Trisomy 18 NFP is vital to parents and their families.

5

Client Served

Rating: 5

Our daughter was diagnosed with trisomy 18 at just 15 weeks into my pregnancy. We were completely devastated, but this organization makes you realize you are not alone. It's a place that you can go to where others understand completely how you feel. It also helped our family & friends learn more about trisomy 18.

4 Lisa397

Volunteer

Rating: 5

I am the Grandmother of the most beautiful Granddaughter ever, though she was only with us for one month, the impact she had on myself and my family can never be put in to words. this Foundation was and still is an amazing gift for families going through the struggles of having a child diagnosed with Trisomy 18. They helped me with so many questions and made me feel like I was the only one they were helping but wasn't alone at the same time....They genuinely care for our families and our babies and our hearts

4

Client Served

Rating: 5

As a grandmother this diagnosis tears at your heart for your grandchild and even more for your children facing the biggest challenge a parent can. For months I visited the site to gain knowledge which I did but also came away with peace. Not in understanding the whys...but in finding solace in knowing all these emotions are shared.