Living With Trisomy 13
An outreach for trisomy and other rare diagnoses
© All text and graphics are copyright of Living With Trisomy 13 www.livingwithtri13.org and all other registered domains to this company
All Rights Reserved. Copyright 2012 .
Cover photo of Pamela Sullivan & her precious daughter Maria, copyright Pamela Sullivan 2004, used with permission.
If We Hold On Together Song Copyright 2002 by Patricia Welch, Ltd. All rights reserved. Used with permission.
Mission:
We are dedicated to assisting families of children with trisomy and other rare diagnoses.
Vision:
We believe in embracing life one moment at a time and provide support to families who chose to carry to term.
Whether they are:
- on the prenatal journey…
- have a child living presently…
- those who’ve had a stillbirth, a child who lived briefly or many days, and those farther along on their journey.
All these families have lived and are living with a rare diagnosis and the reality of how it changes lives. With Courage, Grace, and Hope they continue on this journey experiencing the joy these special children have brought to their lives.
chromosome per cell).There are other, even more rare, types of Trisomy. People with Trisomy most often have multiple anomalies. These can include anomalies of the heart, brain, eyes, ears, gastrointestinal system, kidneys, lips, palate, hands, and feet. Some of the more severe anomalies include blindness, deafness, omphalocele, proboscis, and holoprosencephaly. Each person with Trisomy will have a unique combination of anomalies. We believe that all of these children are survivors if they reach their family’s arms. Some of these children live for hours, days, weeks, or months and others live for many years. We provide a caring and informative place where parents of children with Trisomy can share special moments from the life of their child in albums filled with photographs, comments, and updates. Parents may also wish to join one of the message boards, on which they can provide encouragement, empathy, or sympathy to one another. As you can see, each child is unique and precious, worthy of receiving and giving love, an inspiration to all those they meet.
Vanessa Hernandez, Director of Living With Trisomy 13
“It is our belief that through knowledge and understanding of our children and their qualities of life we can change the stigma that is so wrongfully attached to them.”
~ Vanessa Hernandez
Mom to Isabel
This site focuses on bringing together the families of individuals diagnosed with trisomy. There are typically 23 pairs of chromosomes in a human cell. In Full Trisomy (the most common type) there is an extra (third) chromosome in each cell. Individuals may also have a Translocation Trisomy, usually involving a partial, extra chromosome attached to another partially duplicated chromosome. This ‘blended’ chromosome is also found in each cell. Mosaic Trisomy means that there are two cell lines (one cell line with the typical 23 pairs of chromosomes per cell and one cell line with an extra
*Disclaimer: We provide support for parents who have received a difficult prenatal diagnosis or are raising a child with a rare diagnosis. You should consult with your own physician or other medical professional regarding the opinions or recommendations. We are happy to offer referrals to qualified medical professionals, whenever possible.