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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

99 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.

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!

3 Angela22

Client Served

Rating: 5

Several years after having healthy twins through assisted reproduction we found ourselves expecting a third child. We knew there were risks so decided to see a specialist and have testing done. All early indications were that our daughter was growing well and healthy. It was not until 17 weeks that we were told that our child in-fact had Trisomy 18 and was given a grim prognosis for birth. We were devastated and also faced with how to let our children know that their little sister was going to leave us. The Trisomy 18 Foundation boards were a lifeline for me, holding me up when I could not stand on my own, guiding me when the medical profession had turned away, loving me and my child when I thought no one cared. All of the members, founders and volunteers make this site a valuable resource to all families faced with this disorder that often takes our child before we have a chance to know them. They allow parents to not only honor those precious angels from the moment they hear the heart-stopping words that their child may never take a first breath, but offer so much more information, resources and a sense of direction and purpose, and the support doesn't end when the child is gone. The Trisomy 18 Foundation is an oasis in a storm where parents can stop, breath and remember the important parts of life and living it and to build memories as a family, to embrace their unborn child, or to let them go, during this life changing event in their lives, but also allows those same parents the opportunity to give back to others in need as they are willing and comfortable doing with support and guidance. I feel my journey through loss is very different from what it might, no, would have been without this wonderful Foundation. Thank you to all who contribute to making it what it is.

8 Lee H.

Client Served

Rating: 5

When we found out 5 years ago that one of our twins had Trisomy 18, and our other twin was healthy, it was the most lonely feeling I've ever had. We were immediately thrust into a heart wrenching horror that seemed to have no beginning and definitely no end other than a seeming end to our lives as we knew it. We had no idea what to do, how to think, how to fight for this child we had already come to love. Then I found the Trisomy 18 Foundation. I not only was able to find all the information on what Trisomy 18 WAS, I was able to turn this horror into something that was as beautiful as it could have been, and leave us, 5 years later, with memories so precious, and memories that have less pain. Day or night there were people on the message boards who could offer advice on any and everything, who were always willing to lend an ear, support, and friendship. They KNEW what we were going through. Some of those women I am friends with to this day. If there was a specific question, the staff...the Foundation itself was always there to assist, answer and aid in any way they could. I have learned that Trisomy 18 is the killer of dreams. Through the Trisomy 18 Foundation, I have learned that I AM my childs voice, I AM the keeper of her legacy, and I CAN plan her a life or death that matters, that is important, that will help me remember her with less pain. I am forever grateful for the Trisomy 18 Foundation.

8

Client Served

Rating: 5

I lost my beloved 1st son in October of 2007 after a Trisomy 18 diagnosis. I knew nothing about trisomy 18 and knew no one else that had walked this heartbreaking road. Through the Trisomy 18 Foundation, I found much more information than even my doctor could offer me and more importantly, I found a community of families that had walked in my shoes and could share and cry and heal with me. This is an organization that opens its arms to all families affected by trisomy 18, no matter the choices each family makes. Four years later, my heart is much healed, but I remain an avid supporter of this wonderful, selfless organization.