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LivingWithTrisomy13.org

Ironman for Kids - The Living with Trisomy 13 Community thanks Michael Hennessey for helping to raise awareness for Trisomy 13 and other related disorders. See Video & Details>

Trisomy 13 Support, Information, Resources,  & Links

For PRENATAL SUPPORT CLICK HERE

TRISOMY SUPPORT General Support & Information about Trisomy 13

Immediate Support  Please click here.

Other Trisomy Photo Sites - Families sharing their stories & pictures,

Photographers who provide complimentary services

Other Helpful Resources for Special Needs Children

Finding Doctors & Midwives

 

Other Helpful Resources for Special Needs Children

WISH Organizations (Some are STATE specific)

Alternative Therapies (Thinking outside the box) Beneficial Therapies

Exceptional Parent Magazine

Celebrate Differences "Celebrating the Abilities of Those with Disabilities" - Nice listing of support resources

After the birth of Anna, Mom, Sarah, was inspired to begin a business and ministry...B is for Baby, Blankets and More" hand-made baby and toddler items made with a mother's love.  On behalf of each order received, an item (i.e. burp-cloth, bib or blanket) will be donated to a local hospital; to be distributed to babies with special health issues, babies born premature or families in need.

Haberman FeedersThe Haberman Feeding System  - Specialty Feeding Products for Cleft lip/Cleft Palate Although most mothers and babies can breastfeed without special assistance, sometimes occasional help is needed. Premature babies, failure-to-thrive babies, and babies with specific impairments, such as neurological challenges, may require extra attention. Infants with severe feeding problems can also benefit from specialized feeding products.

New Signing Time! TV Series Now Available from American Public Television Children Learn a ³Hands On² Second Language

Hear Jim Gill's Music - Click on each album to hear audio samples! Jim has produced five recordings of music play for young children and families. Scroll down to see track listings and listen to samples.

 

Special Clothing for G-Tube fed childrenn - Tummy Tunnels is a wonderful idea to hide the needed cuts in clothing for the G-tube fed children

Home Page Heart LogoCongenital Heart Information Network - C.H.I.N. is an international organization that provides reliable. information, support services and resources to families of children with congenital heart defects and acquired heart disease, adults with congenital heart defects, and the professionals who work with them.


pr_bottles_and_nursers.jpgEnfamil Home Delivery - Cleft Lip/Palate Nursers are specially shaped, flexible nursers with an elongated nipple which allow controlled formula flow and assisted feedings.

 


MULTIPURPOSE MOISTURE BARRIER - TEMPORARILY RELIEVES DISCOMFORT & ITCHING - CALMOSEPTINE OINTMENT IS AVAILABLE WITHOUT A PRESCRIPTION
EASY TO APPLY - ONE-STEP PROTECTION - COST EFFECTIVE - TIME SAVING
Protects and helps heal skin irritations from:
Incontinence of urine or feces
Feeding tube leakage
Minor burns, scrapes
Fecal or vaginal fistulas
Wound drainage
Diaper rash
Moisture, such as perspiration

 

 

 


 

Click here to download printable LivingWithTrisomy13.org "awareness cards."

Living with Trisomy 13
Focused on prayerful support and gifts of love to those touched by a Trisomy 13 child.
Inspired By An Angel
Attn: LivingWithTrisomy13
15802 Springdale St.. #68
Huntington Beach, CA  92649

info@LivingWithTrisomy13.org

 

 

Text and graphics © LivingWithTrisomy13.org 2005-2007 All information found on this site was submitted to us directly by the families and used on this site with their permission.
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.
 
*Disclaimer
All material on this site reflects our personal journey with raising a Trisomy 13 child. It is not meant to replace any medical advise of a professional familiar with your specific condition. The personal journeys of any parents on this site are only their opinions and their own journey with having a Trisomy 13 child. You should consult with your own physician or other medical professional regarding the opinions or recommendations expressed within these pages as to your own child's symptoms and medical condition.
 

Looking for ALL families who’ve had a trisomy child of any number. Whether you terminated, miscarriage, had a stillbirth, live birth - living or deceased. Including adoptive and Foster parents. Please fill out the TRIS survey  to help update the medical literature and to improve the quality and availability of medical care. Tracking Rare Incidence Syndromes (TRIS)  Click here to add your information

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