Column: Support bill to help kids with rare, complex conditions

When a journey is long and difficult, early travelers feel a responsibility to help those who must navigate the same terrain.

That's why I went to Washington this month to testify in support of the Advancing Care for Exceptional Kids Act — the ACE Kids Act. I wanted legislators to grasp the life-changing impact of medical facilities for children with complex conditions. I wanted to describe our family's journey and use our gratitude for the Chronic-Complex Clinic at St. Joseph's Children's Hospital of Tampa as a rallying cry for similar medical homes elsewhere.

There is an easier path for exceptional children and their families, but today it's only accessible in a handful of communities. That must change.

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