Every single year this foundation raises awareness about TTTS at the Twins Days Festival. In 2014, My Twin and I were the princesses at the festival and got the privilege to help out at the booth. I loved helping reach out to others and give them information on TTTS. As well as talking to families that have gone threw it. My Twin and I are survivors of TTTs and knowing this organization is in place will only make the world of Twins a better place.
The Twin to Twin Transfusion Syndrome Foundation is a wonderful organization. They help so many people with the information that they send out. I am doing my gold award project for Girl Scouts making packages that the Foundation send out to people. The packages will have things to help the families but also stuff for the twins. I am so great full that I have got to work with Mary, she is most kind person I have ever met.
Mary, and the TTTS Foundation, held our hands as first time parents to expectant twin girls who were gravely ill from the effects of TTTS beginning at 19 weeks gestation. The TTTS Foundation spent countless hours and guidance to help us make the best choices and provide us with knowledge of how and who to seek to help our girls. Sadly at 24 weeks gestation, our recipient baby died from complications of TTTS. Both girls were delivered at 27 weeks gestation, with our survivor sustaining multiple brain injuries due to blood clots passed from her twin sister. There are no adequate words to express the grief we had as parents loosing a baby, and on top of that loss, grieving the loss of a "normal" child. The TTTS Foundation has been a HUGE part of our lives as parents from the very day TTTS was diagnosed to this day nearly 22 years later. Knowing that we had the knowledge, love, and dedication to our girls from the TTTS Foundation has helped us have a sense of peace and acceptance of the outcome of our twins because we knew we were informed and did all we could for our girls. Without the TTTS Foundation, and Mary Slaman the President and Founder, I don't think we could have been able to cope as well as we have through the many physical challenges our survivor has faced. We are forever grateful to this nonprofit organization and all the compassion it encompasses from the beginning to diagnosis, to the pray team, the support we received from death of a baby, and onto the support we have gained from the special needs support system with our daughter. The TTTS Foundation does not stop helping those to delivery, it is a life time support of hope, guidance, and encouragement.
I was diagnosed with TTTS in 2010, I called the TTTS Foundatino and requested the inforamtion packet and it was at my door in 2 days! The compassion that this Foundation and its owner has is the most amazing thing I have seen. The Foundation works with many families all over the world day and night, all hours of the day! This is the owners life's conviction and she is doing an amazing job. The tax documents show nothing but support and love to others, as this is the sold purpose of the President/owner of this foundations LIFE! I couldn't be more happy with this Foundation and will continue to volunteer as the Awareness Coordinator and Conference Commitee member. If it wasnt for the knowledge and commpassion that this Foundation has, I would have never know what TTTS was. Thank you so much for you help and much love to you!!
I do graphic work for the TTTS Foundation from time to time as a volunteer. I owe the TTTS Foundation so much for all they did for me. I was suspected TTTS from 8weeks on but did not "get" TTTS until 3 days before I had to deliver at 28weeks. At 16weeks I was sent to a local "specialist" for TTTS. All that to say that I knew NOTHING about TTTS - it was just letters to me - until I reached out to Mary at the Foundation who promptly replied and gave me a TON of information on boost and bedrest as well as what questions to ask my Dr and what to be looking for and aware of. Had I not known that informaiton I would have been blind throughout. Mary played a key roll in supporting, as my husband was deployed during my pregnancy. Also she gave me contact info bywhich I was able to reachout to Dr DeLia who called me back from his own vacation to give me information and talk with me about my concerns. After my girls were born and home from the NICU I made myself available to the TTTS Foundation however needed as my way of "giving back" to them for all they did for me. At that time I became more and more aware of what all they do and even more-so loved and appreciated all they do!