In 1998, my son was born with meconium ileus and diagnosed with cystic fibrosis by sweat test before one week of age. The Internet was a great source of information and comfort for me, but I found much of the information about cystic fibrosis to be overwhelming for a parent of a newly-diagnosed child. There were, it seemed, others who felt the same and needed a support system specificly for parents whose children have cystic fibrosis.
The beauty of the Internet is that it allows many people from all corners of the Earth to communicate and relate to one another about our common thread, CF. The fact that people with cystic fibrosis are not encouraged to spend time together due to the risk of cross-infection of organisms is another benefit of online interaction.
Less than one year after my son was born, I founded the CF Parents email list to offer support to (and receive support from) other parents who were confronted with the challenges of raising a child who has CF.
I recruited (begged?) another parent to help moderate the email list as it grew, and I thinik we've done a fairly good job of managing the list over these recent years.
Torsten Krafft is the father of a little girl with cystic fibrosis and moderates cfparents from Germany. He has been a great help in growing the list, and he's a good friend, too.
I live in rural Ohio, USA, with my husband and three children, the youngest of which has cystic fibrosis.
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