Learn more about pediatric palliative care:
Children and families who bravely live with serious illness benefit from Pediatric Palliative Care services. Although not common, many new programs are starting to provide an extra layer of support for children and families at any age and any point in their illness. Studies have shown that accessing palliative care early on (as close to diagnosis as possible), greatly promotes quality of life in children. Approximately 14% of children have special health care needs. This number is growing because of advances in health care. Please learn more about pediatric palliative care here.
Learn more about respite:
Many families and children will need extra community support as they live with serious illness. You can learn more about one form of community support, Respite, here.
Learn more about rare diseases:
My son, James, experienced a few rare disorders. One was Hemiplegic Migraine. We experienced the heartache of watching him in intense pain and what appeared to be mini-strokes. It took months and traveling outside of the state to a specialist in Denver to get a diagnosis and treatment.
We're a Friend of Rare Diseases Day (which takes place February 29, 2020), and in honor of people with Rare Diseases, specifically children, we are launching our Random Acts of Kindness Campaign. Please see our "friend" page at Rare Disease Day. You can learn more about the many rare diseases here.