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.
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.
Our first child was diagnosed at 24 weeks gestation after a battery of tests. Being our first child, first grandchild for my in-laws, it was crushing and devastating news. We had never heard of such a thing as Trisomy 18 and thought it was something we would go through alone with many questions going unanswered. However, this group has made a world of difference in our understanding, healing and growth. We now have two beautifully healthy and happy children but they know all about their big sister. We celebrate her birthday every year and use her name daily. Thank you so much.
Our daughter was diagnosed with T18 after markers were noticed in our 20 week ultrasound. Nothing could have prepared us for what T18 meant for our family better than this organization. The information shared via message boards with other parents, and online resources cannot be found anywhere else online or in most communities. The website helps guide parents/family for the decisions that they will face from the time of diagnosis until after the birth of their precious child. Equally as important, each person involved with Trisomy 18 Foundation seems to have also been touched by Trisomy 18 in some way. This is so crucial in helping people heal! It is hard to truly empathize with someone who has never had to deal with T18 if it is something you have never dealt with yourself.
My husband and I were devastated by a prenatal diagnosis of Trisomy 18 for our daughter. In spite of the information we received from doctors, we weren't really sure what it meant on a personal level. The internet can be a scary place when you're trying to get accurate and relevant information about health issues. I found great comfort when I discovered the Trisomy 18 Foundation website. In addition to the clinical information about the condition, the personal stories by community members made the site a valuable resource. It helped me to feel less alone with this grief.
My daughter Adyssun Rae was born August 2, 2010 with T18. I had 7 previous miscarriages before Adyssun and despite the medical professionals advice to terminate the pregnancy my husband and I decided to proceed and let nature take it course. I had to fire two OB's that left me in tears after each doctors visit. After many interviews with hospital board members and experts, we finally found the OB that was supportive and made us feel comfortable with our decision. We were advised of our incredibly low chances of of our baby reaching 1 week old, if she was even to survive the birth. Adyssun made it through the birth and lived for 6 months. The 6 months that my husband and I cared for her was the most special time of our lives. There are no words to describe the joy we felt caring for our very special baby and witnessing the miracle of life daily. Our beautiful Adyssun was tiny and mighty. Our baby bonded our entire family and changed each of our lives for the better...forever. It's true our story is bitter sweet but it is our most cherished life experience.
My second son was diagnosed with Trisomy 18 and this was back in 1999. My former husband and I were so unprepared and miss informed by well meaning doctors who really did not know how to help except to suggest ending the pregnancy. That was such a sad and terrible time. The Trisomy 18 foundation makes a real difference to parents facing having a baby with this disorder. I have been blessed by the stories of others and have found a special community of understanding here.
This foundation has helped me. Three months ago I gave birth to a beautiful baby girl. She was small but I thought nothing of it. Two weeks later I was told she had Trisomy 18. I nor my husband heard of this disease. The doctors said she wouldn't live to see her first birthday and we were devastated. She is now 3 months but doing poorly. She can leave me any day now. This organization has given me the strength to spread the awareness because a lot of people never heard of this disease. I thank them for what they are doing because it is helping me through this tough time.
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!
8 Yrs ago I lost my first born daughter to T18. At the time I didn't know there were organizations out there. Instead of the doctors giving support they wanted to just turn me away. Despite what doctors wanted me to do I carried my baby girl to term but she decided she wanted to fly with the angels. With no support from doctors We had a lot of family support but they couldn't give us answers and even begin to understand our ordeal. But through out these years my loss has given me strength. I just barely recently found this organization and though it has been many years since my daughters passing I feel even more comfort in knowing that families can get the support they need. Thank for doing all the wonderful work you do for these families...
The Trisomy 18 organization was a huge help to my family when our daughter, Alaina Joy, was diagnosed at 17 weeks gestation. Through the community I was able to gain knowledge of what may come of my daughter's life. I was able to make sound decisions as far as birth plans, and hospital care while keeping in mind that her life was going to be brief. I'm thankful for the Foundation for providing me with so much information to help make Alaina's 3 days on Earth the best 3 days in a very gut wrenching situation. We are forever family, as we are all connected by 1 extra chromosome. Thank you.
I lost my baby girl to T18, a syndrome I'd never even heard of before. Through the foundation I gained a knowledge and respect for those affected by it. Not everyone's choices are the same but require respect and understanding. The foundation is there to help those in need of support, and recognition of the efforts of the volunteers and expert advice that is at hand should not go unnoticed. Wherever possible I would like to raise awareness and believe this award would be extremely beneficial in doing just that.
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.
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!
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!
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.
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.
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.
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.
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.
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.
I found this page after the loss of my niece. I found comfort in seeing pictures of the other babies, knowing we are not alone in our loss. I enjoy reading about other families, sharing there joy and sadness. This page serves to educate people on something that you normally wouldn't hear of till it hits close to home. Great job! Keep it up!
I have not had a positive experience with this organization and would certainly direct other families just learning of a trisomy diagnosis to more informative and supportive groups: SOFT, Hope for Trisomy, etc. The website and blog boards have not changed in the 4.5 years since i have been navigating in the world of trisomy and don't understand why. There are supportive parents out there that want to help whether a child is surviving and thriving or your angel has gone home too soon. Accurate information can empower a parent in crisis to make the best decision for their family and I do not feel that this foundation provides the most current or accurate information. They have a website that provides information for parents who have lost a child but very few to no resources for those that children survive!
Foundation Staff 09/24/2013
It's always a challenge to balance the need for accurate, complete information about Trisomy 18 and the reality of it's devastating consequences and sharing information about and for families with living children coping with Trisomy 18. We hear you that you think we don't have that balance right from your point of view, and we’ll keep working on that. Fortunately, there are many community resources and disability groups that are available for parents with living, medically-fragile children, and so we don't try to duplicate those services but rather help with referrals to those other support groups. You mention 2 good ones we regularly refer to -- and we hope you'll honor them with positive reviews on their profile pages here at Great NonProfits.
I cannot thank you enough, VIctoria, The Trisomy 18 Foundation and all the amazing Trisomy 18 parents for all of your support, and words of kindness and advice. My daughter was diagnosed with Trisomy 18, against the odds of what the doctors all told me, she did survive for almost 11 months... 11 months of my life that I will never forget and will treasure forever. The doctors had told me to take her home to die, when she 'surprised' them by surviving birth, but I chose to take her home to live. The Trisomy 18 foundation provides so much support while you are going through such a devastating period. They provide the facts, the real facts that yes many do not survive, but there are survivors.
My Daughter - in - law lost a child to Trisomy 18 before she met my son. She still suffers from her loss and always will. I started reading the Facebook articles on the these families. I can't stop. My Heart aches for them. I am so very greatful that I had three healthy children. Most people I s/w don't know what it is, so I can at least spread the word. If you are as lucky as I was, please look it up and do the same. Thank you for listening.
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.
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.
My brother and sister in law have a son, baby Peter who was a trisomy 18 baby. He lived a very short time. We had a brother who was also a special needs child who died at age 11. We had a cousin with MS.
The Trisomy 18 Foundation has done a tremendous job supporting the needs of a diverse group of trisomy 18 children and families. There are children who like my nephew pass on early. They leave behind the broken hearts that need mending. Trisomy 18 Foundation is very good at making these short lives count for something and have genuine meaning with the tributes on the legacy page. They offer support to families in mourning with other families who have been there and offer true solace and compassion. They offer awareness of the medical condition of Trisomy 18. And they pass along hope and lift up all of us with stories of those affected who are beating the odds and living longer lives. The collective experience of the families gifted with a Trisomy 18 child is channeled productively to three advisory councils, Family, Medical and Research which brings first hand knowledge and experience to families in need, and to professionals who are aided by the insights, knowledge and wisdom acquired. This foundation does important work. All advisory councils do valuable work. Especially important is the guidance that the Trisomy 18 Foundation offers to help to determine what areas of research are needed most to help combat and finally conquer this genetic disorder. I endorse their efforts highly. -James R. Peterson, P.E./M.B.A.
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.
When my second daughter was born, we had no idea she had Trisomy 18. When she was diagnosed, I felt lost, alone and devastated. The Trisomy 18 Foundation was there for me to create a Legacy page, and to lean on. I continue to get support from this foundation even now... almost three years later.
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.
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.
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.
As a colleague in the field of prenatal testing and genetic conditions, I have had the true honor to interact with the Trisomy 18 Foundation on a regular basis. They serve a wide array of stakeholders, including patients, families, key opinion leaders, academics, industry and policy makers. The T18 Foundation leadership is organized, thoughtful and comprehensive in providing services and tools that help mothers and families coping with the pre-diagnosis, diagnosis and decision-making post-diagnosis of Trisomy 18 and Edwards syndrome. I truly consider them to be a GREAT Non-profit, and I hope you will, too, after learning more about their offerings.
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.
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
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.
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.
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.
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.
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.
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.
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.
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)
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.
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!
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.
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
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.
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!
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).
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
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.
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!
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.
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.
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.