Immediate Support
Just diagnosed with a Trisomy child? Are you asking yourself what to do first? Do you want to talk with someone as soon as possible? Please click here.
Info Pack for Parents
"Mitchell is really just a typical boy who likes to play and have fun just like any other child. I want medical professionals and healthcare providers to look at his video and learn that his life is worth saving. Our doctors have been incredible. They are so supportive and have always been cautiously optimistic about Mitchell, it makes a world of difference."
~Katie – Mom to Mitchell
"Sadly...Many of the medical and professional community are woefully uninformed about Trisomy 13. Outdated statistics and misinformation cause so much hopelessness...and also cause many to withhold life giving treatment to a child who deserves the same chance any typical kid would receive."
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Have a child living with Trisomy or another rare disorder? We would love to add your child to our Gallery and Feature their story
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www.livingwithtri13.org
Just diagnosed with a Trisomy child? Do you want to talk with someone as soon as possible? Please click here
"Mitchell is really just a typical boy who likes to play and have fun just like any other child. I want medical professionals and healthcare providers to look at his video and learn that his life is worth saving. Our doctors have been incredible. They are so supportive and have always been cautiously optimistic about Mitchell, it makes a world of difference."
~Katie – Mom to Mitchell
"Sadly...Many of the medical and professional community are woefully uninformed about Trisomy 13. Outdated statistics and misinformation cause so much hopelessness...and also cause many to withhold life giving treatment to a child who deserves the same chance any typical kid would receive."
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A CHAPTER of HOPE for Trisomy 13 & 18
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 23pairs of chromosomes per cell and one cell line with an extra 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, Executive Director of Living With Trisomy 13 and mom to Isabel
Whether they are: on the prenatal journey, have a child living presently, 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. This site focuses on bringing together the families of individuals diagnosed with trisomy and other rare diagnoses.
Not Compatible with Life, a diary of keeping Daniel By Kylie Sheffield
Kylie (mom to Daniel) would love to share her book with you. Please email her for more information. shefs@aapt.net.au
This website contains general information about medical conditions and treatments. The information is not advice, and should not be treated as such. The medical information on this website is provided “as is” without any representations or warranties, express or implied. Living With Trisomy 13 makes no representations or warranties in relation to the medical information on this website. You must not rely on the information on this website as an alternative to medical advice from your doctor or other professional healthcare provider. If you have any specific questions about any medical matter you should consult your doctor or other professional healthcare provider. If you think you may be suffering from any medical condition you should seek immediate medical attention. You should never delay seeking medical advice, disregard medical advice, or discontinue medical treatment because of information on this website. Nothing in this medical disclaimer will limit any of our liabilities in any way that is not permitted under applicable law, or exclude any of our liabilities that may not be excluded under applicable law.
Immediate Support
Have a living, prenatal, or treasured memory trisomy story? We would love to add your child’s story to our site !
“Embracing Life One Moment at a Time”
