A Rare Day to Celebrate Special Kids and Families


Leap Day! The rarest of days, which only comes around once every four years. While this day may be a trick of a calendar, it is also Rare Disease Day, a globally coordinated movement to bring awareness to those diagnosed with a rare disease.

A disease is considered rare when it affects fewer than 1 in 2,000 people. More than 300 million people around the globe are living with rare diseases, ones that often defy diagnosis or treatment. 70% of rare genetic diseases begin in childhood, and many of these children and families in our area have found their way to Crescent Cove.

Crescent Cove improves the lives of these children and families by providing respite care, which are short, 2-5 day stays in which we take over the care of a medically complex child while their family takes a break from providing round-the-clock care to them. During a child’s respite stay they can enjoy pet and music therapy, massage therapy, energy work, and savor the quiet calm of our Home on Twin Lake. We also serve families by creating a sacred space for end-of-life care, where we provide 24-hour medical care to a child in their final days, while also supporting the parents and extended family members.

We celebrate these children and families, who lead remarkable, beautiful lives. This year’s Rare Disease Day theme is “Share Your Colors!” We truly treasure the gifts that children with rare diseases bring to the world, and are honored to be a part of their lives.