Rae Banks

Trisomy Resources

Support Groups

Learn more about Trisomy 13

assistance from non-profits

  • Support Organization for Trisomy (SOFT): The premier organization for rare trisomies, composed of trisomy families, friends and medical professionals. SOFT’s mission is to inspire hope and respect all on their trisomy journey. Provides connections, resources and support for their members.  
    • The annual SOFT Conference and video resources are invaluable! I highly suggest browsing their website, watching their videos and becoming a member (free for all!).
  • Isaiah’s Promise: Support for Families Carrying to Term After a Severe or Fatal Prenatal Diagnosis
    • Isaiah’s Promise matched us to a family meeting our requested criteria to guide us through Faith’s diagnosis. They also sent thoughtful items for memory making such as personalized hats and jewelry. They also provided printed resources via mail.
  • Now I Lay Me Down To Sleep: Provides portraits free of charge to families with a terminally ill baby or who recently experienced the death of their newborn
    • Now I Lay Me Down To Sleep captured memories of Faith that I’ll cherish forever. Their images are beautiful. Many of the black and white images of Faith on this website were captured by their photographer.
  • Ronald McDonald House: Offers lodging near your child’s hospital free of charge.
    • We used the Ronald McDonald House during Faith’s hospital stay and are very thankful for this organization. You’ll need to contact your hospital’s social service department to book a room.
  • Asher’s Answers: Provides financial support for families of babies diagnosed with a rare trisomy.
  • The Stella Effect: Offers financial assistance to help families celebrate their living and angel babies (ie: birthday parties!). Also offers community and retreats. 
  • Abel Speaks: Offers many services for families who receive a life-limiting diagnosis for their baby, to include: mentorship, medical connections, photography, keepsakes, celebration of life assistance and retreats.
  • Verity’s Village: Offers support groups and pastoral counseling. Provides pregnancy journal (specific to this type of pregnancy), welcome packet and guidebook. Provides bereavement support for families who lost a medically complex child. 
  • JustSibs: A site to help siblings cope with their brother/sister’s illness or injury.
  • Coping Space: Mission: To enable children with cancer and other life changing illness and injuries, as well as their families, to cope with their illness today, while building resilience to thrive in the future.
  • Operation Little Angel 101: Provides cuddle boxes for families who experienced miscarriage, stillbirth or early infant death.
  • Cradling Memories – The Milo James Coe Foundation: Mission: to provide perinatal families anticipating a limited life or experiencing a loss with resources to make a lifetime of memories.
  • Sufficient Grace Ministries: Created specifically to provide comfort to women and families who have lost a baby through miscarriage, stillbirth, or infant death. Sufficient Grace Ministries offers a comprehensive list of support options for bereaved parents, and parents currently carrying a baby with a life-limiting diagnosis. A team of staff, leaders, and volunteers helps us offer the wide range of free services we make available to more than 1,200 bereaved families each year, worldwide,  fulfilling the mission of SGM to offer the same comfort to others we received from the Lord in our time of need. 

US Government Programs

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