When I first found out I had either TTTS or SIUGR, I searched the Internet frantically for information. I was lucky enough to find the Twin to Twin Transfusion Syndrome Foundation's Website. I called the number and left a message. I thought a volunteer or representative would call me back, but Mary, the founder, called me back herself. She was an amazing support throughout my entire pregnancy. She also helped put me in touch with Dr. Julian De Lia, who is an amazing man and doctor. He is the doctor that invented the laser surgery that is used to treat TTTS.
Anytime I had questions or was upset, Mary was there to support me and my babies. She always lifted me up when I felt hopeless.
She is a wonderful, caring person, and I would highly recommend this organization. She played a great part in saving my twins' lives.
We were given no hope, told to terminate one baby in order to save his brother. We found the TTTS Foundation online and made an immedidiate phone call and spoke with Mary. Mary gave us hope, helped us find a doctor who would do his best to save both our babies and guided us through the rest of our pregnancy. We delivered 2 healthy babies, all because this woman wouldn't give up on us! Mary has devoted her life to saving babies and deserves so much more credit and money that she gets! She is always putting others first!
I went through ttts with no one to turn to. So wish id come accross the foundation at the time. The help and guidance given helps so many through unbelievably hard times. A lady dedicated to helping others.
My daughter was diag with ttts at 19 weeks, since then she has has two amino reductions as the laser treatment failed because of a bleed, at now 26 weeks she is stable, but without the help of this organisation, I am not sure were we would be, as the general info on the net paints a very black picture. This group gave us hope, consideration and most of all support..... thank you.. no matter what the outcome, you were there when needed.
When I was told about TTTS I knew nothing and read stuff on the internet that made me crazy, then I got in contact w/ Mary right before they were born and the support is amazing now. I was told to cut blood off to my donor but they found away to do the laser surgery and I have 2 1/2 year old Miracles!!! This Group is more then just information it's a FAMILY!!!
excellent, informative , and very very caring , personally they have helped me through the toughest times in my life , so so grateful for its founder mary , she works tirelessly to help others through there TTTS journey .... thankyou so much for just caring
This is a great amazing wonderful caring loving Foundation. I suggest to everyone who is faced with TTTS, to please contact TTTS Foundation. Get as much information on TTTS as you can so you can decide what is your best way to treat it..There are options. There is help. There is hope..
The TTTS Foundation has helped my family so much. I can never Thank Mary and the Foundation enough. Without the info and all the talks and the other ways that the foundation has helped me get to where i needed to go for treatment, I may have lost both of my twins. I am so thankful for the Foundation.
The Twin to Twin Transfusion Foundation is a wonderful organization committed to fighting this disease. The woman who runs the Foundation has dedicated her life to spreading awareness and has selflessly helped countless families. Without her work, there would be many more babies dying from this disease. Sadly, there will always be angry and bitter people looking to place the blame for their situation on someone so this Foundation sometimes becomes the scapegoat. The TTTS Foundation may not be able to reach every doctor in the world but they are certainly trying to and have come a long way. I have, and will continue to support them and donate to them. In addition, I continue to raise money for the Foundation so they can continue the great work that is being done and has been done over the last 2 decades.
My younger sisters were diagnosed with TTTS. Throughout most of their lives, they did not realize how much this disease affected children everywhere. They attended a national conference with the doctor that performed their surgery so many years ago. The attitude my sisters had regarding this syndrome and its victims when they returned was inspiring. After that brief exposure to this foundation and with their help, my sisters have since started to reach out to other survivors. Without them, my sisters would not be the wonderful women they are today.