This Father’s Day, Patient Worthy honors the strength, resilience, and unwavering dedication of fathers of children with rare diseases. Their journeys inspire us all and remind us of the vital role they play in their families and communities.

These extraordinary dads have been meeting the needs of rare disease children despite the heartbreak they feel when they watch their children suffer, and the anguish they feel when they have to accept the premature death of their children. On Father’s Day, let’s show them our gratitude.

In recognition, we are republishing an important article that highlights the extraordinary challenges faced by fathers of children with rare diseases. These fathers often navigate complex medical systems, provide vital emotional support, and advocate tirelessly for their children in ways that are often overlooked. Their resilience and dedication deserve recognition and understanding.

Read HERE to learn about Bob and his commitment and strength he demonstrated every day.

The article was written by Denise Crompton who with her husband Bob, raised four children, the oldest of whom, Kelley, had the rare disease of Mucolipidosis III.  The many years that they spent caring for Kelley prompted Denise to write two books. Kelley’s Journey: Facing a Rare Disease with Courage chronicles their own daughter’s experiences. Diagnosis: Rare Disease includes some of the experiences of 12 more families, and was written to help raise awareness of all that is involved in living with rare conditions. All of Denise’s royalties go toward rare disease research. The Cromptons live in New Hampshire, where they spend their retirement years enjoying their many grandchildren, while still reaching out to help families with rare diseases.