|
Jonah & The Whale Foundation was created in 2003 and launched in early 2004 by parents who were frustrated with the continued miscommunication between physicians and the continued misdiagnosis within the medical community. Such a situation eventually led to the unexpected loss of 3-year-old, Jonah, for whom the foundation is named. When a family is dealing with a complex disease or a perplexing disability, the stress and frustration with those involved can be overwhelming. The challenge of effectively communicating your child’s needs while maintaining clarity with physicians and educators is the juggling act that most parents encounter.
The foundation provides parents with binders and resource materials to encourage organization of medical and educational information, and to further encourage better communication between all parties involved. The foundation also has a mobile & web library with books about many diseases and disabilities for parents to use or even purchase at a low cost. A collection of durable medical equipment is also available for parents who have exhausted every avenue to obtain insurance coverage. Finally the foundation offers emotional support for the parents and siblings as well family networking for parents to meet others in similar circumstances.
J&TWF distributes family support and education through specific brochures and web pages for moms, dads, and siblings. Issues include ways for mothers to protect themselves from difficult hospitals and challenging physicians, encouragement for fathers to become more knowledgeable about and more involved with their special needs child, as well as suggestions for parents to
include and support the needs of their well children.
| 
