Support Organization For Trisomies 18, 13, and Trisomy Related Disorders (also known as SOFT; it is a 501(c) 3) is a network of families and professionals dedicated to providing support and understanding to families regarding the issues related to the diagnosis and care of children with rare trisomies and related chromosomal disorders. Support is provided from prenatal diagnosis, during the child's life, and after the child passes. SOFT respects each family's personal decisions and does not place judgement about a family based on the difficult decisions that will be made during this time.
In addition, over the years SOFT has consolidated medical information on hundreds of children with rare chromosomal disorders. I cannot begin to tell you how very important this is to fellow parents. Our children face a mountain of diagnoses--beginning at birth--and doctors do not know how to proceed. Most physicians have seen one or two children in their lifetime with a rare disorder and are baffled at how to treat them because of the complex nature of their illnesses. It is not uncommon for these children to suffer from cancer, heart failure, ASD or VSD (holes between various heart chambers), seizures, severe reflux, obstructions in digestive pathway, spinal complications, brain anomalies, to name a few.
Any of these are serious, but in combination physicians are often at a loss on how to help. Some even suggest to give up on helping your child because they will die soon anyhow. Ellie suffered from the aforementioned medical conditions, but we never (not even once conceived of) giving up on Ellie's happiness and quality if life (and I had no problem telling any physician who even suggested giving up on her where to stick it).
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