At this time nine years ago, we were only a couple months away from welcoming our daughter Katie into our lives. Although we knew in advance of her birth that she had a couple medical issues that would need to be addressed, little did we know of the many different diagnoses she would receive within her first few months of life. To learn that your child is profoundly deaf, partially blind, and has a heart defect that will likely require surgery, in the midst of dealing with numerous appointments and surgeries for a cleft lip and palate, was quite a lot to digest and deal with during a time when we just wanted to celebrate the arrival of our long-awaited child.
When Katie was 3 months old, her geneticist put together the pieces of her various medical issues as being part of the key criteria for CHARGE syndrome. Knowing nothing about CHARGE at the time and receiving very little information from our geneticist, we brushed CHARGE off as just an acronym for the distinct issues that Katie was facing. It took us several months and much information to realize that CHARGE was much more than a group of independent diagnoses, but rather an all-encompassing multisensory syndrome that would affect Katie in almost every facet of her life.
Much of the information we learned about CHARGE came from the CHARGE Syndrome Foundation. Their website provides a wealth of information for new parents, medical professionals, and educators. But beyond the information provided, the Foundation has led us to meet some amazing professionals and educators who are dedicated to helping our children lead the best lives they can live. Through the Foundation, we have also met some of the most dedicated and caring parents, and have made lasting friendships with people all over the country and around the world, many of whom we have never met face-to-face.
We hope you will join us in supporting the CHARGE Syndrome Foundation in its third annual Charge It for CHARGE campaign. The money donated will go to support the Foundation’s efforts in further research, development of additional informational resources for families and professionals, and its biennial International CHARGE Syndrome Conference, to be held in July 2011 in Orlando, Florida. Be assured that any amount, large or small, will go to good use and will be appreciated by the Foundation and the families it serves.
Click on the link below to visit our personal web page to make a donation, become a fundraiser or simply to learn more about the Foundation. Your gift will make a difference in the lives of individuals with CHARGE syndrome!
Thank you for your support of the Foundation as well as your love and support for Katie and for us over the past nine years.
Love,
Leslie, Arlin & Katie Kauffman
Click here to help us Charge It for CHARGE!
