People With Different Rare Diseases Share Common Struggles

Second in a series. Read part one. In last week’s column, I shared the inspirational story of Cassidy Huff. Cassidy and my son Cullen became friends through the Make-A-Wish Foundation 12 years ago. When they met, Cullen had been recently diagnosed with pulmonary hypertension (PH). Cassidy has…

Cassidy Huff Doesn’t Let Expectations Get in the Way of Finding Joy

First in a series. Those in the pulmonary hypertension (PH) community often refer to each other as PHamily. They don’t live under the same roof, but they do have a strong understanding of what life is like for other patients and caregivers: endless doctor appointments, hospitalizations, procedures, and surgeries. Their…

Surviving the Stages of Grief Caused by a Life-threatening Illness

It’s challenging to develop healthy coping styles upon receiving a shocking pulmonary hypertension diagnosis. My 8-year-old son, Cullen’s, PH diagnosis was like a magic wand that instantly transformed our family’s lives. For roughly two years we had struggled to find the cause of Cullen’s distress, but once we had an…

Make-A-Wish Foundation Provides Joy to Children, Families, and Volunteers

In last week’s column, I shared how the Make-A-Wish Foundation granted my son Cullen’s prodigious wish to meet President George W. Bush in 2008. To be on the receiving end of this amazing nonprofit organization is extraordinary. The foundation creates adventures that far exceed expectations. To be on the…

My Son Dreamed Big, and Make-A-Wish Made it Happen

In 2008, my 8-year-old son was diagnosed with pulmonary hypertension (PH). Being told that Cullen had an incurable, life-threatening illness was traumatic. It was impossible to imagine that there would be happy days following that news. That year, two wish granters from the Make-A-Wish Foundation visited Cullen at home.