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September 25, 2013
1 person found this review helpful

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September 25, 2013
1 person found this review helpful

I am the mother of a baby girl who was diagnosed with Trisomy 18. I had Paige Elizabeth Russell on June 11, 2013 via C-section and two days later found out she had been diagnosed with Trisomy 18. We took her off her ventilator on June 26, 2013 and lost her. The people with the Trisomy 18 Foundation have been amazing!! The little things they do, even just talking to you, helps me a lot. I've been dealing with Kristine Shaughnessy and I couldn't have asked for a better person to talk to. I highly recommend this foundation to anyone.

Ways to make it better...

If I had to make changes to this organization, I would...

Not a thing!

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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?

2013

September 22, 2013
1 person found this review helpful

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September 22, 2013
1 person found this review helpful

I found this page after the loss of my niece. I found comfort in seeing pictures of the other babies, knowing we are not alone in our loss. I enjoy reading about other families, sharing there joy and sadness. This page serves to educate people on something that you normally wouldn't hear of till it hits close to home. Great job! Keep it up!

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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?

2013

September 22, 2013
1 person found this review helpful

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September 22, 2013
1 person found this review helpful

My Daughter - in - law lost a child to Trisomy 18 before she met my son. She still suffers from her loss and always will. I started reading the Facebook articles on the these families. I can't stop. My Heart aches for them. I am so very greatful that I had three healthy children. Most people I s/w don't know what it is, so I can at least spread the word. If you are as lucky as I was, please look it up and do the same. Thank you for listening.

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Will you volunteer or donate to this organization?

Likely

How much of an impact do you think this organization has?

A lot

When was your last experience with this nonprofit?

2013

September 21, 2013
1 person found this review helpful

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September 21, 2013
1 person found this review helpful

My brother and sister in law have a son, baby Peter who was a trisomy 18 baby. He lived a very short time. We had a brother who was also a special needs child who died at age 11. We had a cousin with MS.
The Trisomy 18 Foundation has done a tremendous job supporting the needs of a diverse group
of trisomy 18 children and families. There are children who like my nephew pass on early. They leave behind the broken hearts that need mending. Trisomy 18 Foundation is very good at making these short lives count for something and have genuine meaning with the tributes on the legacy page. They offer support to families in mourning with other families who have been there and offer true solace and compassion. They offer awareness of the medical condition of Trisomy 18. And they pass along hope and lift up all of us with stories of those affected who are beating the odds and living longer lives. The collective experience of the families gifted with a Trisomy 18 child is channeled productively to three advisory councils, Family, Medical and Research which brings first hand knowledge and experience to families in need, and to professionals who are aided by the insights, knowledge and wisdom acquired. This foundation does important work. All advisory councils do valuable work. Especially important is the guidance that the Trisomy 18 Foundation offers to help to determine what areas of research are needed most to help combat and finally conquer this genetic disorder. I endorse their efforts highly. -James R. Peterson, P.E./M.B.A.

Ways to make it better...

If I had to make changes to this organization, I would...

Work on increasing fund raising efforts at all levels.

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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?

2013

November 14, 2012

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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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Will you volunteer or donate to this organization?

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

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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

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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

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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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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 10, 2012

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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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Will you volunteer or donate to this organization?

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

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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

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