Welcome to SOFT. We are so glad you’ve found us. Whether your child is newborn, newly diagnosed or you are a seasoned parent of a child with a Trisomy diagnosis, we are here to support you on your Trisomy Journey. SOFT is a community of parents who are expecting, raising or remembering a child with Trisomy
Managing Your Child's Care
Being the parent of a special needs child can be overwhelming, exhausting and lonely and at the same time be very rewarding and fulfilling. Between finding the right care options for your child, dealing with insurance all while caring for a child with very full time needs sometimes we feel like we just can’t do it. We know you can and we are here to help you along the way.
You know your child better than anyone and you are always your child’s best advocate. The SOFT website can help arm you with the information, statistics, stories and more to prepare and support you as you advocate and care for your child. Here’s what we suggest next:
Here are some helpful tools to get you started
EVERY CASE IS UNIQUE: Delivering optimal medical care to babies born with Trisomy 13 and Trisomy 18. - Dr. Martin McCaffrey speaking at the Perinatal Conference in Dublin, 2016
Dr. McCaffrey has been a strong advocate and support for families facing difficult perinatal diagnoses. He is a member of the International Trisomy Alliance and Be Not Afraid Boards.
Care of the Infant and Child with Trisomy 18 or Trisomy 13 was written for parents who are expecting, living with or remembering a child affected with these disorders. The greater portion of text covers problems and management of care of the live born infant and living child. The book has been continually updated as new information has become available and is the only known resource of its kind.
A protected site for connecting family and friends during a health event.
The Little Angels Foundation
This non-profit foundation provides caskets free of charge to families who have lost a child. They ask families to connect with them through their child's funeral home. They will speak directly to parents but prefer a 3rd party contact. Some states such as California have laws that will not allow caskets to be shipped in from other states. A funeral home director will likely know if there is such a law in your state. Located in Louisiana, time can be an issue for out of state delivery and at present the builder is one man. It takes 24-48 hours to complete a casket. If the size needed is in stock, 2-3 days' notice is needed but for out of state delivery 5-7 days is best.
Molly Bear Foundation
This foundation was created in loving memory of Molly by her parents. "The goal of the Molly Bear Foundation is to provide supplemental financial assistance to families raising children with Trisomy 18. Unfortunately Molly Bear will not be able to support every family in need, but we will do our best" (Quote from Website).
National Dissemination Center for Children with Disabilities (NICHCY)
is a national information center that provides information on disabilities and disability related issues such as early intervention and special education, focusing on children and youth, birth to age 22. Information is in English or Spanish.
Pacer Center is a parent training and information center for families of children from birth through 21 years located in Minneapolis that serves families across the nation as well as Minnesota. EZ-AT-book-2011-final.pdf is a booklet which can be ordered or downloaded from this site, and has practical ideas to help the disabled child (birth - three year old) but many ideas are applicable to kids of all ages. Be sure to also check out Assistive Technology at this site.
Tracking Rare Incidence Syndromes (TRIS)
The TRIS project provides a means to change perceptions about children with rare trisomy conditions. Through data from TRIS Surveys, new information is available about long-term survival, positive surgical outcomes and achievement of developmental milestones such as using gestures and vocalizations to communicate, walking (with or without assistance) and interacting with family members. A combined total of 860 surveys representing children and adults with rare incidence conditions such as trisomy 18, trisomy 13 and trisomy 9 mosaic were completed as of 10/31/16. 58.3% of children were at least 2 months of age or greater. A total of 1007 children and adults are enrolled in the project; many are SOFT members. Your participation is welcomed and encouraged. Contact Debbie Bruns, Ph.D., Southern Illinois University, Carbondale, IL at firstname.lastname@example.org or go to the project enrollment page located at http://tris.siu.edu/survey/form/PreEnroll.php
The Compassionate Friends (TCF)
TCF is a national non-profit organization which offers grief support after the death of a child of any age. Local chapters of TCF may be available in some areas.
Mothers in Sympathy and Support (MISS) Foundation
The MISS Foundation is an international on-line support for grieving families. Random Act of Kindness Day done in memory of my beautiful child is an annual MISS event.
A charitable perinatal hospice and infant refuge.
Be Not Afraid (BNA)
BNA is a private, non-profit corporation whose mission is to provide comprehensive, practical and peer-based support to parents experiencing a prenatal diagnosis and carrying to term. In addition, BNA encourages development of new services so more parents find support at diagnosis by offering training, consulting and technical assistance as well as materials to other organizations and individuals committed to service development.
Perinatal Hospice/Palliative Care Programs
Provides a list of Perinatal hospice/palliative care programs and support in the USA and Internationally. These programs are a relatively new concept of care for parents who choose to continue a pregnancy after learning their expected baby has a life-limiting diagnosis.
Prenatal Partners for Life
Prenatal Partners for Life was founded by Mary Kellett, mother of Peter who had trisomy 18. This organization provides support information and encouragement for carrying to term with an adverse prenatal diagnosis and support for raising your child with special needs after birth.
Now I Lay Me Down to Sleep (NILMDTS)
NILMDTS foundation administers a network of almost 6,000 volunteer photographers in the United States and twenty-five international countries. At a family's request, a NILMDTS Affiliated Photographer will come to your hospital or hospice location and conduct a sensitive and private portrait session. The portraits are then professionally retouched and presented to the families on an archival DVD or CD that can be used to print portraits of their cherished baby. Our entire network of affiliated photographers graciously donates their time and talents to our families and we are proud to be able to offer our services at no cost. Video of Trisomy Children
Portraits by Dana
Specializes in gently drawn pencil portraits for families who have suffered an early loss. Whether you have photos of your child or not, a peaceful remembrance portrait can be created and customized to your wishes. I believe all 'life' is precious and should be remembered and recognized - no matter how short, no matter how small.
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