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.
Au cours des 45 années de vie de ma fille Kelley, qui est atteinte d’une maladie rare, nous avons dû appeler les secours ou l’emmener aux urgences à l’hôpital plusieurs…
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Beaucoup de personnes atteintes de maladies rares connaissent l’importance des premiers intervenants