Denise Crompton and her husband, Bob, raised four children, the oldest of whom, Kelley, had the rare disease of Mucolipidosis 3. 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.

Considere las Familias con Enfermedades Raras Durante las Vacaciones

A menudo escuchamos a personas hablar sobre el estrés que sienten durante las vacaciones, mientras que los miembros de la comunidad de enfermedades raras piensan en silencio: "¡No tienes idea!"…

Continuar leyendo Considere las Familias con Enfermedades Raras Durante las Vacaciones