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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

105 Stories from Volunteers, Donors & Supporters

7

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.

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.

1

General Member of the Public

Rating: 4

My beautiful son was diagnosed with full Trisomy 18 when he was 20 weeks inside me. We never heard about Trisomy 18 and only given few weeks to decide wheater carry to term or termination. The Trisomy 18 Foundation and its forum provide us information and support we need during these difficulty times. We decided to carry the baby to term. Emmanuel was born at 32 weeks and 3 days; lived for 1 hour 41 minutes. We were sad but we are prepared. Thank you Trisomy 18 Foundation.

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.

2

General Member of the Public

Rating: 5

The Trisomy 18 Foundation is a wonderful organization to turn to in order to make sense of a sensless situation. Last November we lost our litle Willow Marie at 30 weeks gestation. I then carried her for another 8 weeks while her twin sister (Charley) grew strong and healthy (she does not have T18). The Trisomy 18 Foundation was place to turn to be with others who knew what I was going through. Friends and family were supportive, but could not understand. A year later, I still turn to the foundation.

2 Visagrl

General Member of the Public

Rating: 5

In the beginning month of Jan.2012 we were informed that our baby boy was diagnosed with full Trisomy 18. He was still born on March 11.This was my second pregnany in a row with a T18 diagnosis. I was pregnant last year with a baby girl with full T18 also. We lost her at 16 weeks gestation. The Trisomy 18 foundation website helped me realize I was not alone through this journey. Having a baby diagnosed with this terrible condition is so devasting. When you are told by several doctors that it is such a rare condition and hospitals only see 3-5 T18 babies born every year and the treatment involved you have no were to turn except the internet. You can't pick up the phone and talk to someone in your area to help you through this, but I have met so many others that had to go through this same thing through T18. We need to help raise awareness for T18 and all the families affected by this. Thank you Trisomy 18 Foundation.

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.

2 Beverley M.

General Member of the Public

Rating: 5

Our angel Alex was diagnosed with Trisomy 18 shortly before he passed away in utero at 18.5 weeks. We got the news at 12 weeks that his spine was not closing and that there were a few things not developing properly. He stopped growing at 12 weeks but still managed to fight to almost 19 weeks. This site has helped me through dealing with our journey of Trisomy 18. This Nov. 25 will be his 7 angel birthday! He now has 2 younger siblings Jasmine and Brandon who are as healthy as can be. I miss him everyday and think on how he is watching over us. I know he visitis his siblings often :o)

2 Colleen19

Donor

Rating: 5

The Trisomy 18 Foundation provides an excellent resource for families who have received the devastating news that their child has Trisomy 18. Without such a resource, so many families would have a much more difficult time learning about the disease and a much more difficult time meeting other families who are living with the diagnosis. It provides the research but also offers the emotional support that one can after being through the situation first hand.

2

General Member of the Public

Rating: 5

My baby was diagnosed with Trisomy 18 at 16 weeks. I was scared & confused & knew nothing about it. I still remember getting the news that my blood work came back abnormal & I was asked to come in the next day for more testing. I didn't have a clue about what I was just told. I quickly searched the internet & the Trisomy 18 Foundation was such a blessing. I was terrified at what I read but at the same time I found comfort knowing that there were other families who were going through the same thing. The foundation provided my family and I a place to find comfort and knowledge that nobody else could provide for us. It provided answers & wisdom to prepare for the unknown. We were able to educate our family & friends about what our baby was diagnosed with & what lied ahead of us. Our baby boy passed away at almost 20weeks. Nothing can ever prepare you when you lose a child but when I feel alone, I know I can always count on the Trisomy 18 Foundation. Its where I can go & see how other families are doing & give me a spirit of hope and know that one day I will get to hold my baby again. We love you Charles Adam Martinez! My sweet little angel, you are free from pain & protected by our heavenly father & loved by many!

2 Mena2

Client Served

Rating: 5

Trisomy 18 foundation was a God send. When I was pregnant with my first child I was told at 5 months he had Trisomy and when I recieved further testing it was confirmed he had Trisomy 18. I had no idea what this was and no outlet; but after reasearching this I stumbled upon this foundation's website. Not only could i talk to other woman that were going thru what I was going thru but I could also get advice and read other mother's stories. This foundation really helped me to learn that there were other answers beside aborting my child at 5 months. I truly love this site! With this disease being so hush-hush and not spoken about you can really get the feed back and support you need! From Marlina M.

2 Patricia44

General Member of the Public

Rating: 5

I found out that my son, baby to be due Jan 26 has T-18, I had no clue what it was or where to go just that the Doctors said I should abort an gave me no hope, I found the trisomy 18 website an was just blown away on what it says. It helped me understand what to expect an where to look for more resoucres an how to try an cope, I got to read others stories an know that I'm not alone, Since I reached out I have made a special friend who lost her baby girl this july an she has been so helpfull. I'm ver thankful this foundation is here to help an I will be going to confernces an helping others an relying on help from them. thanks Patricia Walker

2

General Member of the Public

Rating: 5

My eldest daughter's first-born was diagnosed with Trisomy. She visited with us for 11 days before she left to be held by Jesus. The heartbreak that followed was extremely painful, beyond words painful. Of course all of us were ignorant of what Trisomy was, how it affected the newborn, whose fault ... Yes, whose fault. What a terrible burden to bear. The Trisomy 18 Foundation, their website, and the knowledge that was shared allowed my daughter to move on (never forgetting) but moving towards a new life that was born a boy. He is perfectly normal and is now enjoying his first year in school. It's been 7 years since she visited ... she will never be forgotten, she will always have our hearts.

2 Shannon32

General Member of the Public

Rating: 5

I absolutely love and support this organization! My sister in law just recently went thru the heartbreak of losing a child to Trisomy 18. I like so many others had never heard of Trisomy 18, but it changed our lives! I feel it is very important to get information out so people will know that it exsists and that there needs to be research done to help find a cure! My beautiful niece Ava Grace made it to almost 4 months, and I will never believe or accept the statement that she was not compatible with life! Thank you and keep up the good work!

3 Shannon P.

Client Served

Rating: 5

We were told early on that there could be something catastrophic with our son and it was at about 20 weeks that the diagnosis of Trisomy 18 was confirmed. The devastation of this diagnosis for our first, and much wanted and beloved, son is nearly impossible to convey. There were so many moments that I was not sure if I could survive the pain, both during and after our time with our son. The Trisomy 18 Foundation gave us a forum to express our love, our fears and our need for support. They linked us with parents who have come to be some of our closest and lifelong friends. They also provided us a permanent memorial place for our son, which has meant the world to us (http://www.trisomy18.org/goto/Oliver.Paul).

1 Tracy19

General Member of the Public

Rating: 4

i would love to share so much about my time carrying harry looking after him and losing him but it would take up so much space all i can say is that when harry was born i loved him with all my heart he was a fighter right till the end he passed away due to a hospital saying whats the point of helping him when he will die one day from his illness as its terminally ,my son lived for 3 1/2 months i miss him every second of each day he would have been 12 this year , so many hospitals in UK are not well known to understand Trisomy 18 we had to tell special care what this was and what they could and couldn't do i always share every thing about T18 to my friends and my Face book as so many need to know please keep up the good work

4 Kristina P.

Volunteer

Rating: 5

My name is Kristina I have 2 very healthy children and one angel waiting for me in heaven! I went 38 wks without knowing anything was wrong with Noah. He was born on sept 25th 2011 with trisomy 18 which we did not know this until 4 days later. He lived for 13 days he fought so hard. This is the hardest thing my family and I have ever had to do. I questioned everything but I know he is better now. I wish there was a cure or more awareness. I never knew anything about t18 until I had Noah. I think about him all the time. I hope this finds someone. I hope this all gets better one day.

7 Melissa45

Volunteer

Rating: 5

I was 19 weeks pregnant with my daughter when I was told that she had a birth defect called Trisomy 18. I didn't even know what that was never mind what it would mean for my daughter's survival. Everyone around me told me not to go on the internet but that was the place I found the most information and the most compassion I have ever received. After the loss of my daughter the Trisomy 18 Foundation brought me together with the most amazing women I could have ever met. This foundation has helped me through the loss of my daughter. They were the ones who understood exactly how I felt. I didn't find this with family or friends, I found this in a community of grieving mothers who lost their children the same way. I don't know where I would be today without their support and guidance. Thank you to all those behind this wonderful organization!