Those who have lost hope, who live in disappointment and bitterness and find in life no joy, no love? These, it seems to me, are the real disabilities.
- Fred Rogers, Mister Rogers Neighborhood
Carrie's Heart was founded in 2005 to restore those fundamental human needs of love, joy and hope to children with severe disabilities and their families.
Modern medicine has made it possible for children with severe disabilities to survive infancy and live longer lives. However, medical costs and the need for round-the-clock care can overwhelm their families. Life can become a struggle against deepening poverty. The responsibility frequently falls on one caregiver, usually the child’s mother.
The international aid organization, UNICEF, says that one quarter may suffer from impaired growth and development, as well as acute malnutrition. The economic safety net may be stronger in first world countries, but the stigma, emotional and physical tolls experienced by children with disabilities and their families are universal.
We first met Valerie in Mexico in 2006 when she was nine years old. Cerebral palsy made it impossible for her to ingest food and she was dying of malnutrition. Living in severe poverty, her mother had given up hope.
We worked with local Mexican social service organizations to bring Valerie and her mother to Houston for life-saving surgery. We continued to support Valerie and her family upon her return.
Valerie only lived for three more years, but the lessons she taught us drive our mission to this day. She showed us how important positive experiences are to children with disabilities, like the joys of birthday parties, trips to the beach, and simple delights like blowing bubbles.
We continue our work with children with severe disabilities and their families in Valerie’s honor. By providing resources where they have none and sharing love, joy and hope, we help them understand that they are not alone. That is Valerie’s legacy.