Q1 of Q&A

A: A friendly reminder that this site is not intended to be public (though we are aware of the challenges that could arise in trying to keep it private). The audience it is written for is primarily family and friends in various parts of the world who want to get to know Katya and keep informed about details of her progress and her family's experience, with additional specific invitations having been extended to some others such as those who have shared in Katya's health care and have a personal interest in following her development, and certain parents/caregivers of other trisomy 13/18 children. This is so far the easiest way for us to disseminate the information to the many people who care about Katya and her family, and we feel fortunate to have these modern means. (Please check with us before giving out the website URL to anyone outside of family and friends to make sure it's okay with us. We realize there are some other people who might benefit from the site and in many cases it should be fine, but please check with us first -- and please don't list the URL on any directory, search engine, or other non-family means of communication. Also, please do not copy any of the material on this site without our permission -- it should be fine, but please just check first. Relatives and friends can go ahead and copy the photos on this website for their own personal use -- no need to ask permission since it is already granted here.)

As for the level of detail revealed in this site, a good many friends and family are definitely wanting it, so that's a primary reason for the detailed format -- they've really been captivated by Katya and are filled with a loving curiosity and compassion for her, as well as for her family. (Even some who might be expected to not express a desire for that much detail sometimes end up asking us for it!) So with our very many relatives and friends it's actually far easier for us to give much detail in one package, rather than small amounts of detail in numerous customized packages.

Also, by giving family and friends a very personal perspective from within the minds of those most responsible for Katya's care -- her parents -- we hope this will enhance how many of those closer to us will really come to know and love Katya alongside us. We have already heard how some visiting the site feel like they're really getting to know her, and we hope that in many cases that will help inspire a lifelong connection and friendship with her. One can never have too many good friends and this could not be truer than for someone in Katya's situation. Many children with her condition are reported to find much happiness and fulfillment specifically through their relationships, including even with some they may not see very often. We would like to foster an intimacy that could work towards that happiness for Katya as extensively as possible. Some who have gotten to know about her primarily through the website are eagerly waiting to meet her and be her friend. If we as Katya's parents were to predecease her, then her other friendships -- with relatives and other friends -- will be particularly vital to her ongoing happiness. One of our greatest concerns about Katya is what could happen to her if her parents should suffer the misfortune of a particularly premature passing. It is perhaps the one potential problem that, other than directing that all our children are to live together while they are children, we otherwise have the least assured solution for. It would take an enormous amount of love and energy to properly care for Katya in future; she and her primary caregivers would benefit cumulatively from bits of friendly support that would amount to a lot in combination from many friends. We could feel reassured knowing that there are many people amongst our very loving associations that would continue to be Katya's friends, with an intimate and practical knowledge of and human feeling for her past accomplishments and challenges as described intimately on this website for family and friends -- from the unique perspective of the two who love her and feel for her like only parents can. So through this website, and other means, we're giving Katya a little help in making some long-lasting friends -- a natural parenting responsibility.

Another reason for giving personal and controversial detail is to fill a void that will get filled with something anyway -- it might as well be the truth. Trisomy 13 and the related struggles are largely a mystery to those outside of direct experience with it. If we don't fill in the unavoidable intimate questions with facts, then some of the many curious people who make up our colorful circle of associates might only have their own imaginations to do the filling -- and don't we have some pretty vivid-imagination kind of friends and relatives!

Another important hope and purpose is that a relatively open revelation about the experience around Katya's medical issues will contribute in its small way to building for a more ethically and humanely proper handling of trisomy 13/18/etc. patients in the future. A good number of people who visit this site -- among our relatives, friends, and guests -- are in the health care field, and more than a few could encounter future medical cases of this kind. For example, we were contacted by a nursing educator (previously involved in Katya's care) for permission to allow some students in a particular well-known Canadian nursing program to access the site as a project for educational purposes. We were initially surprised by the request but on consideration were gratified by the recognition that these kinds of experiences and issues are important enough to learn from. Information can help all of us make a better future. Katya's story helps make her life more meaningful in ultimately helping others like herself, by helping those who impact on the lives of others like her and their families. Such an achievement would also be a form of 'giving back' in that it would only be following the value imparted to us through the experience of others that have come before her, who have in fact helped her through their accomplishments and the accomplishments of their parents and those who assisted them. (You can learn about a few of those other people in the "Acknowledgments" section of this website.)


				*For Friends of Katya Maria Sansalone* *Q1 of Q&A*



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		Q: Who is this Internet site for and why are the News Updates so personal, detailed, and diary-like?



		A: A friendly reminder that this site is not intended to be public (though we are aware of the challenges that could arise in trying to keep it private). The audience it is written for is primarily family and friends in various parts of the world who want to get to know Katya and keep informed about details of her progress and her family's experience, with additional specific invitations having been extended to some others such as those who have shared in Katya's health care and have a personal interest in following her development, and certain parents/caregivers of other trisomy 13/18 children. This is so far the easiest way for us to disseminate the information to the many people who care about Katya and her family, and we feel fortunate to have these modern means. (Please check with us before giving out the website URL to anyone outside of family and friends to make sure it's okay with us. We realize there are some other people who might benefit from the site and in many cases it should be fine, but please check with us first -- and please don't list the URL on any directory, search engine, or other non-family means of communication. Also, please do not copy any of the material on this site without our permission -- it should be fine, but please just check first. Relatives and friends can go ahead and copy the photos on this website for their own personal use -- no need to ask permission since it is already granted here.) As for the level of detail revealed in this site, a good many friends and family are definitely wanting it, so that's a primary reason for the detailed format -- they've really been captivated by Katya and are filled with a loving curiosity and compassion for her, as well as for her family. (Even some who might be expected to not express a desire for that much detail sometimes end up asking us for it!) So with our very many relatives and friends it's actually far easier for us to give much detail in one package, rather than small amounts of detail in numerous customized packages. Also, by giving family and friends a very personal perspective from within the minds of those most responsible for Katya's care -- her parents -- we hope this will enhance how many of those closer to us will really come to know and love Katya alongside us. We have already heard how some visiting the site feel like they're really getting to know her, and we hope that in many cases that will help inspire a lifelong connection and friendship with her. One can never have too many good friends and this could not be truer than for someone in Katya's situation. Many children with her condition are reported to find much happiness and fulfillment specifically through their relationships, including even with some they may not see very often. We would like to foster an intimacy that could work towards that happiness for Katya as extensively as possible. Some who have gotten to know about her primarily through the website are eagerly waiting to meet her and be her friend. If we as Katya's parents were to predecease her, then her other friendships -- with relatives and other friends -- will be particularly vital to her ongoing happiness. One of our greatest concerns about Katya is what could happen to her if her parents should suffer the misfortune of a particularly premature passing. It is perhaps the one potential problem that, other than directing that all our children are to live together while they are children, we otherwise have the least assured solution for. It would take an enormous amount of love and energy to properly care for Katya in future; she and her primary caregivers would benefit cumulatively from bits of friendly support that would amount to a lot in combination from many friends. We could feel reassured knowing that there are many people amongst our very loving associations that would continue to be Katya's friends, with an intimate and practical knowledge of and human feeling for her past accomplishments and challenges as described intimately on this website for family and friends -- from the unique perspective of the two who love her and feel for her like only parents can. So through this website, and other means, we're giving Katya a little help in making some long-lasting friends -- a natural parenting responsibility. Another reason for giving personal and controversial detail is to fill a void that will get filled with something anyway -- it might as well be the truth. Trisomy 13 and the related struggles are largely a mystery to those outside of direct experience with it. If we don't fill in the unavoidable intimate questions with facts, then some of the many curious people who make up our colorful circle of associates might only have their own imaginations to do the filling -- and don't we have some pretty vivid-imagination kind of friends and relatives! Another important hope and purpose is that a relatively open revelation about the experience around Katya's medical issues will contribute in its small way to building for a more ethically and humanely proper handling of trisomy 13/18/etc. patients in the future. A good number of people who visit this site -- among our relatives, friends, and guests -- are in the health care field, and more than a few could encounter future medical cases of this kind. For example, we were contacted by a nursing educator (previously involved in Katya's care) for permission to allow some students in a particular well-known Canadian nursing program to access the site as a project for educational purposes. We were initially surprised by the request but on consideration were gratified by the recognition that these kinds of experiences and issues are important enough to learn from. Information can help all of us make a better future. Katya's story helps make her life more meaningful in ultimately helping others like herself, by helping those who impact on the lives of others like her and their families. Such an achievement would also be a form of 'giving back' in that it would only be following the value imparted to us through the experience of others that have come before her, who have in fact helped her through their accomplishments and the accomplishments of their parents and those who assisted them. (You can learn about a few of those other people in the "Acknowledgments" section of this website.)



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