Trisomy 18 Foundation

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What is Trisomy 18?

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Caring for a Child

 

Touch lives...share your child's legacy

katie smilesCongratulations on the birth of your precious child! We know that every moment and every milestone with your child is a treasure, but we also realize that caring for a child with Trisomy 18 can be very challenging. There are so many decisions to make.

Should you choose comfort care? When should you take your baby home? Should you use a feeding tube? Should you have surgery? When? What about occupational therapy? Is there any financial assistance available? What about child care? The list is long.

It is often helpful to read stories of others who are in similar circumstances and how they are handling it. We have some stories of families who have or are caring for their child in the Caring for a Child Family Profiles section as well as those who have shared their stories in  their child's Legacy Page. The Self Advocacy section of our site also offers some helpful articles and resources for caring for your child.

You may also receive your own Start Page, where you are directed to the information that is most pertinent to you right now, in your present situation.

We also have an online community where you can interact with other families and ask them questions directly about their experiences. See the Online Support Community home page for more information about this community and how you can join it. Of particular interest will be the Caring for A Child board.

Here is some additional reading that may be helpful:

Grants Available for Families Struggling with Child Health-Related Expenses
Apply Now!

Celebrating your child
Suggestions for ways to celebrate the life of your precious child.

Introducing "Our Child's Legacy" Program
The Trisomy 18 Foundation is excited to announce a new program for supporting parents of children with Trisomy 18. Called "Our Child's Legacy", this program provides parents with an easy way to create a website for their child, including a photo album, guestbook, and friendly URL to share with friends and family.
 
Recent Developments Related to NCLB Legislation
Parents caring for a disabled child related to a Trisomy 18 will want to be aware of how No Child Left Behind (NCLB) legislation greatly impact public educational resources available to your child.
 
Trisomy 18 and Hepatoblastoma
Brief Clinical Report from the American Journal of Medical Genetics about a child with trisomy 18 and hepatoblastoma.
 
Resources for applying for Social Security Income(SSI) support for a disabled child
Attached are some documents that may help you get started in applying for Social Security Income.
 
Management of infants with large, unrepaired ventricular septal defects (VSDs)
Management of infants with large, unrepaired ventricular septal defects and respiratory infection requiring mechanical ventilation
 
You Are Not Alone
For Parents When They Learn That Their Child Has A Disability 
 
Holding Your Baby Close - Kangaroo Care
Holding Your Baby Close - Kangaroo Care
 
Car Seats for Children with Special Needs - Premature Babies
Due to the size of most trisomy babies at birth, standards for premature babies may be the most valuable in assisting you to determine which car seat is right for your child.
 
Exceptional Parent Magazine
Exceptional Parent Magazine

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    4491 Cheshire Station Plaza, Suite 157
     Dale City, VA 22193
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