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Matthew and Steven TTTS Walk for the Babies

Running to Save Babies...because she never had the chance

In Honor of Alyssa and Memory of Jessica, Because we love you

About The Foundation
The Twin to Twin Transfusion Syndrome Foundation is an international 501C.3 non profit organization established 28 years ago to solely provide immediate educational, emotional... learn more. The Twin to Twin Transfusion Syndrome Foundation is the first and only international 501c.3. nonprofit organization solely dedicated to providing immediate and lifesaving educational, emotional and financial support to families, medical professionals and other caregivers before, during and after a diagnosis of TTTS. We are dedicated to saving the babies, including helping families get to treatment, improving their future health and care, providing NICU, special needs and bereavement support, furthering medical research and keeping families together the way twins are meant to be. Over 10,000 families have been helped since 1989 when the founder promised her twins, who suffered from TTTS, that they would be known and remembered, that she would find the answers, and that no parent would ever hear again, "There is nothing that can be done." Little Steven passed away. Matthew survived and is now on the Board of Directors fighting TTTS alongside his mother. reduce length of paragraph

We were diagnosed early in my pregnancy with TTTS March 2008. Not knowing anything about the disease I went to the internet where the first site I found was The TTTS Foundation. I was scared, but determined that I wasn't going to be like any of the people I read about who had lost their children. I was going to be one of the lucky ones. Although I desperately wanted to believe this, I kept finding myself reading these heart-wrenching stories about losing one, or both babies, and watched video after video on you tube crying my eyes out every night.

I was monitored closely, 2 ultrasounds every week, one amnioreduction, 2 cerclages, with bed rest and boost for a month before being admitted to the hospital for strict bed rest in the Trendelenberg position. My girls were born at 25 weeks and 4 days, Jessica Elizabeth and Alyssa Grace, weighing 1lb 10oz and 1lb 14oz.

They were beautiful girls, alive, with a tough road ahead of them, but again I was determined that we came this far, and these girls were going to live happy healthy lives. My determination wasn't enough, because as a result from complications in utero from TTTS, Jessica had many strikes against her; severe brain damage, severe bowel damage, and severe lung disease. Jessica was given her wings June 12, 2008, after spending one month here with us on earth...time given to us to show her how much she is loved, and how much her love affected us.

The foundation provided me with a large pamphlet in the beginning when I had no other information about TTTS, and they also provided me with a package of bereavement material after the loss of my daughter. Mary was in contact with me through email, and Dr. De Lia had contacted me on the phone before one of my surgeries. The support I received from the TTTS foundation was incredible and I am very grateful. The foundation has helped so many families by support, education, and even financial assistance, covering costs to help patients get the surgeries needed. I made this page to help give back to the foundation and make people more aware of twin twin transfusion syndrome. Any donation to help the foundation to continue supporting families unfortunate to have this disease would be appreciated. We are donating for healthy babies.

Thank you for taking the time to read my page.
(Our full story can be found at http://jdm-jandkspregnancyupdates.blogspot.com)


Since 1989, The Twin to Twin Transfusion Syndrome Foundation has been solely dedicated to saving the lives of babies diagnosed with TTTS and helping, honoring and remembering all faced with this terrible disease. By sharing your love with us in such a meaningful way, babies will be saved and fighting TTTS will be kept a priority. Thank you for your donation and for making a difference in the lives of babies who desparately need us to care.

Goal $500.00
Total Donations: $490.00

 
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