TRISOMY 18 FOUNDATION
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November 14, 2012
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.
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Unsure
How much of an impact do you think this organization has?
A lot
When was your last experience with this nonprofit?
2012
November 13, 2012
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.
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Will you volunteer or donate to this organization?
Definitely
How much of an impact do you think this organization has?
Life-changing
When was your last experience with this nonprofit?
2012
November 13, 2012
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.
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Will you volunteer or donate to this organization?
Likely
How much of an impact do you think this organization has?
Life-changing
When was your last experience with this nonprofit?
2012
November 13, 2012
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.
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Likely
How much of an impact do you think this organization has?
Life-changing
When was your last experience with this nonprofit?
2012
November 10, 2012
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)
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Likely
How much of an impact do you think this organization has?
A lot
When was your last experience with this nonprofit?
2009
November 8, 2012
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!
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Will you volunteer or donate to this organization?
Definitely
How much of an impact do you think this organization has?
Life-changing
When was your last experience with this nonprofit?
2012
November 8, 2012
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
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Will you volunteer or donate to this organization?
Definitely
How much of an impact do you think this organization has?
Life-changing
When was your last experience with this nonprofit?
2012
November 8, 2012
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.
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Will you volunteer or donate to this organization?
Likely
How much of an impact do you think this organization has?
Life-changing
When was your last experience with this nonprofit?
2012
November 8, 2012
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!
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Will you volunteer or donate to this organization?
Definitely
How much of an impact do you think this organization has?
Life-changing
When was your last experience with this nonprofit?
2012
March 20, 2012
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
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Will you volunteer or donate to this organization?
Unsure
How much of an impact do you think this organization has?
Life-changing
When was your last experience with this nonprofit?
2012
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