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.
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.
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.
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.
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
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.
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.