[Sorry we're so far behind in updating this. There are lots of names still to add here, particularly from the CCU and onward including more 4D, as well as ER and 7B. We'll get to it eventually.]

We are grateful to the many people who have contributed in various ways to help deal with a very difficult situation. This is the hardest thing Rachel and I have ever had to face, but it would have been even more challenging had it not been for the love, caring, and skill many of you dedicated to Katya and her family. There have been literally hundreds of people that have already been of support in some way, and our heartfelt thanks goes out for all of your help.

We would like to acknowledge some people openly here, while noting that this is not a comprehensive list and that the list will grow as we dedicate more time in adding to this website. It is unfortunate that we didn't keep better records of names of new people we have met through this experience. Until we happen to remember or retrieve your names, please know that we deeply appreciate the care you have provided to Katya and other members of her family. If anybody is brave enough to remind us of any outstanding examples of helpful people not mentioned below, we would greatly appreciate an e-mail to that effect. Also, if you're up to it please do the same for any 'secretly' helpful things you may have done while nobody else was looking. We're sure Gemma and Caleb will enjoy reading about those efforts when they're older, so don't be shy. Other types of personal introspectives in the context of Katya would also be happily received. It would be nice to eventually have a wide collection of anecdotes describing the experiences of other people around the event of Katya's birth and early months.

Here are some names of people/groups that come to mind as having been specially helpful, in roughly chronological order and, again, in no way representing a comprehensive list:

With deep thankfulness, Sam/Rachel greatly appreciate and highly value so many of Katya's relatives: Grandparents, Aunts, Uncles, Cousins, and all the other kinds of relatives who have been a special presence in our lives during this time when family has shined as brightly as ever. There could unfortunately be no practical-length mention here of all the names and the kindnesses attached to them, especially considering the sheer number of related families and a truly special high-reaching love that flows through so many of Katya's relatives. We hope some day she will somehow know the extent of love and empathy that has reached her from so many hearts of kindness.

We give very warm thanks also to our non-relative friends, who have continued to be full of the love and caring that helped make them our friends in the first place. The sentiments expressed above for family apply to you as well. After all, you are to us 'family'. Thank you especially for all the wonderful, 'grounding' cards and acts of kindness that were a great comfort to receive in such utterly bewildering circumstances. We miss you all in this time where infection risks to Katya have mitigated much of our usual public activities and to that degree your fellowship in person. As with our relatives, a fair list of names that belong here would be overwhelmingly long.

We very much appreciate those staff members at Women's College Hospital that were so helpful during and immediately after Katya's birth, with special mention of the wonderful nurses Karen and Anne, and also to neonatologist Dr. Ng and geneticist Dr. Kahn who both managed to break some of the worst kind of news (about the differential probabilities) in the best way that could be expected.

Thank you, Dr. Robert Farber, our dear pediatrician, colleague, and thoughtful friend. As could be relied upon, you were there for our family -- all of us, and especially for Rachel in her time of sore need.

There were some amazing NICU (Neonatal Intensive Care Unit) nurses, doctors, and other workers at Toronto's Hospital for Sick Children who patiently shared their hearts and hands for the vital medical care of our baby in difficult and very complicated circumstances. First, the nurses: Very special mention for understanding, bravery, ability, and inspiration goes to Katya's core nurses Evelyn, Janet, Eleanor, Elizabeth, and Annette. And much thanks also to the other nurses who wonderfully supplemented the core group: Vicky, Lydia, Marilyn, Jo-Ann and others. Thank you so much Pam for your outstanding support, and your kind friendliness extended so thoughtfully and diligently to Gemma and Caleb. Thank you Lisa for the very vital, highly capable support and empathy you gave in those trialsome first couple of weeks. Thank you Mary Ann and social worker Rebekah for your compassionate and thoughtful artwork with the keepsake foot molds. Thanks also to Gillian whose warm compassion was felt when in her presence even though not assigned as a nurse to Katya. We are grateful for the skill of nurse Rachel who's precision on that first night of extubation was evidently decisive to Katya's survival through those unparalleled, most horrifying overnight hours of darkness. We also thank several other nurses whose names are unfortunately escaping us at the moment. We thank the doctors who helped keep Katya alive and as healthy as possible, very special mention going to neonatologist Dr. Christine Newman who skillfully held everything together through the most pivotal decision implementation with a grace and sensitivity that was so very grounding to us and to Katya's overall needs; Dr. Jae Kim, Dr. Max Perlman (! who just can't seem to get rid of me the last couple of years), and a number of other neonatologists who provided vital support for Katya's survival -- some of whom had to do their lifesaving work from their (at least then) opposite side of the ethical controversy. Thank you Dr. Parvez for sharing in our happiness over Katya's successful heart surgery, and for your very close monitoring of Katya's health needs in her final weeks of stay at the NICU. We also thank the friendly, sensitive, and ever-smiling information clerks at the NICU reception desk: Ximena, Alice, Meredith, Karen, Natalia, and Luc; as well as an RT or two whose hearts even in brief passing of interaction seemed as big as the lungs they were watching over. We also very much would like to mention Dr. Guy Millman who had managed even in his fleeting contact to become for us one of the more memorable and encouraging members of the NICU team even though Katya was never assigned as one of his patients. We are further thankful to geneticist Dr. Kahn who continued to work with us at HSC, and who's sensitivity, knowledge, and openness were very helpful in the initial forming of a vital informational base from which to begin one of the most difficult decision-making processes of our lives. The reference material you provided was vitally accurate, and proved to be of pivotal importance by opening the door to an informed decision about treatment.

Warm thanks for the kindness of surgeons Dr. Ted Gerstle and Dr. Andrea Hayes-Jordan who treated us with memorable compassion around Katya's first (i.e., abdominal GI) surgery.

In general acknowledgment of all those who supported a truly ethical approach to our decision on treatment, we would like to give an impression here of how valuable your assistance has been. We believe that in Katya's particular case it would have been a grave injustice to have deprived her of her neonatal and early infancy life experience that we view as having become truly meaningful to herself and others that have been inspired by her, and we thank everyone who contributed to the accurate, complete medical/ethics information that allowed the full development of our conviction. Whatever else happens, Katya at least had a neonatal and early infancy participation in life through which she experienced seeds of love and humanity. And she really has already moved other people in meaningful ways, thus at least to that degree has contributed to society. In all of this, her rights as an individual were protected in truth and not just in words. Further, through surgical and other interventions Katya has now been given the best currently available chances of experiencing the maximum potential of childhood that really has been achieved by other kids with her type of genetic challenge -- kids that are living a largely happy life despite the challenges and limitations, with minds that grow, hands that play, and relationships that develop and become enriched with mutual love and affection. Thank you to all those who honestly contributed to an informed and ethically structured decision.

We are deeply grateful for bioethicist Dr. Randi Zlotnik-Shaul. There could be no adequate justice in the words of appreciation here that would only begin to express the great value of your shared and applied wisdom, your kind heart and human compassion, your principled resolve, and your professional focus. There is much gratitude and admiration for you.

We are undefinably, greatly indebted to Utah-based geneticist Dr. John Carey and his colleagues, whose exhaustive work on trisomy 18/13 is helping families, physicians, and support medical staff around the world in the context of these otherwise little-understood and often outright misunderstood patients. Dr. Carey, your additional 'exhaustive work' directly with Sam in all the selflessly generous, many and lengthy telephone discussions was nothing less than heroic and absolutely critical and pivotal in imparting to us vital -- truly vital -- and uniquely complete facts on the natural history of trisomy 13 that no parent in this situation can morally afford to be without if they want, as we think they should, to make a truly fully informed decision on the matter of whether to apply or withhold life-saving medical treatments to such children. It would not be overstating to say that Katya may not have remained alive to this day had it not been for Dr. Carey's decisively-important assistance in informing us accurately and so fully about the disease. It was through Dr. Carey that we learned specifically how virtually all of those trisomy 13/18 children that survive infancy (especially in the absence of holoprosencephaly) have the assured potential of becoming happy kids that can really enjoy life and truly relate and love interactively if given the opportunity and normal stimulation. Those simple facts became the crucial point of the matter, representing the most decisive information that we used as Katya's parents to pursue lifesaving treatment for her. (N.B. -- Dr. Carey generally assumes a neutral stance on the matter of aggressive treatments for trisomy 13/18 children, offering inquiring parents only the truly accurate clinical information from which they can make their own decisions. It would be misleading for anyone to assume here that he pressured or even 'coached' in the direction of ensuring treatment. What he did do is provide accurate, properly researched, and properly complete information in a diligent and timely manner -- information that on that comprehensive level of detail, decisive detail, was not fully and readily presented to us as parents of a child who was being cared for even in one of the world's leading health care institutions, evidently a world-wide problem that typically occurs with these cases.)

We are grateful to SOFT (Support Organization for Trisomy 18/13) members and associates who served a support role very much in line with that noted above regarding Dr. Carey: Ann Barnes, an outstandingly sensitive and sensible mother of Megan who has trisomy 18; Megan's nurse Sandra Cocke; Barb Vanherreweghe, SOFT's director and the mother of Stacy who has trisomy 18; and Stacy's nurse Judy Laird (who was actually the first to give Sam direct-experience anecdotal confirmation of the happiness potential of these children). You have all been vitally important in providing us with accurate, direct-life-experience anecdotal information for perspective that was needed to complete a truly proper decision-making process around Katya's decisive health care. SOFT very evidently contains a unique group of people who have had their humanity tested and in part proven through the selfless, love-based acts that are necessary to successfully parent and care for a trisomy 13/18/etc. child. Gratitude is also felt towards Stacy and Megan specifically, Aaron B. (a trisomy 13 child whose similar example of happiness and affection was shared with me by Dr. Carey), and other challenged children/young adults in that caring network, none of whom we personally met or spoke to but rather know of by reputation of their joy in living and the bond of love that is held between them and those close to them. Albeit without even fully realizing the degree, these children too have contributed meaningfully to society and humanity. Nothing speaks more to basic humanity and individuality than the attainment and pure expression of love and joy. For their love and joy we and others are thankful and improved. It is our hope and prayer that somehow their true full potentials will be realized in whatever extension of life may come beyond that which is presently held.

We thank congregational Hospital Liaison Committee members Jim Magill and Chuck Goodvin, tireless workers always endeavoring to hold a torch of light in some of the darkest places we have recently had the misfortune of having to visit. Thanks also to their official and non-official supportive colleagues, especially their wives Kay and Daisy for sharing their husbands at some very inconvenient times. Dear Jim, friend of a good few years, I send you a very special thank-you for one of the most inspiring demonstrations of shepherding love and kindness that I have ever had the privilege of being moved by. "Always" will also be the context of my appreciation for you, and not just the context of future offered availability of your rare and highly valuable humanity and leadership. Appreciation is also expressed for Walter Graham who in a decisive moment found easy to do what others did not in the resolution of an important non-medical aspect of the surgical decision.

Thank you Dr. Jerrold Lerman for your compassion and open sharing of knowledge, and for establishing some important anaesthesiology groundwork in Katya's case that ultimately led to what we believe were safer options for her surgery.

Very-much-indebted gratitude goes to Dr. Mark Galantowicz and Bob Kroslowitz at the Arnold Palmer Hospital's Nemours Cardiac Center in Orlando, Florida. Your generous sharing of your valuable medical innovations and experience in CPB microcircuit perfusion and specialized cardiac surgery has been very greatly appreciated. The word is out and your innovatively intelligent good work is spreading to Canada, and beyond I am sure. Thanks also to diligent and caring assistant Sharon Levine who repeatedly tracked those boys down and kept the communication going whenever it needed to happen. You have all freely helped my daughter Katya and for this we are very grateful and deeply impressed.

Thanks to Kimberley Meighan of HSC's resource Centre for Health Information and Promotion who with impressive adeptness and precision located, collected, and copied for our use published material about trisomy 13 that served us well educationally. Respect and credit is also expressed for her swift updating of CHIP's parent information folder about trisomy 13/18 in the face of later research; now other parents can be better and more swiftly prepared for such a decision as my wife and I had to face.

Through chance timing and effect, I have the rather unusual occasion to be grateful for those who inspired many of us with acts of human kindness and principled sacrifice on behalf of and amongst the victims of the September 11th terrorist attack. My own personal world had already vastly changed shortly before that, in late August, in a manner that I had specifically thought of as an unspeakable horror against an innocent child and her family. Just days later, from out of a very large-scale type of unspeakable horror, came true life stories of unselfish giving and love that highlighted the great value of humanity helping humanity through generous giving and meaningful sacrifice. It is difficult to articulate fully how those heroes contributed indirectly to supporting my own struggle except to say that it meant a lot to me that in such grand manifestation people were willing to do so much and risk so much to try helping others smitten by misfortune. I think I somehow felt less isolated in my efforts for Katya, which is a good reason to be grateful if one knows how unprecedentedly isolated I sometimes did feel in that struggle.

Thank you to good neighbors Yasmine Eagleson and Cathy Milne who on different occasions stepped in with kindness to provide timely last-minute/extended baby-sitting for Gemma and Caleb during some intense hospital days. It was greatly appreciated and very helpful. Thank you also to the gentle and welcoming staff at HSC's PlayPark. The measure of your extensive help in carefully watching over and kindly entertaining Gemma and Caleb during the past three months has been great indeed. Big thanks and special mention also to Lisa Sheinin and Howard Cohen who are among those who helped us keep our kids and ourselves properly fed during the most intense days by doing all those grocery store runs for us, and applying so much friendly energy, thought, and understanding support to Rachel and Sam.

We are impressed by and appreciative for the many warm and helpful hospital volunteers. You are like spots of sunshine brightening up the places you occupy here and there throughout the hospital. Special thanks are sent to the Women's Auxiliary for their very kind and thoughtful gifts to Katya. There's an enduring image in my mind that I think helps define the kind of people who end up as volunteers at HSC: it was very moving to watch a volunteer sweetly cuddling, rocking, and beautifully singing to a little baby whose family was not there for the moment. Such volunteers are obviously invested in really giving something meaningful, naturally human, and comforting to children who have suffered the misfortune of being so sick but at the same time have the good fortune of being so much cared for.

Warm thanks to Ed Hindle who gave generously of his time and energy to 'hold down the fort' for us in Canmore while we tried to sort out the further complicated Alberta issues impacted in part by Katya's crisis. Thanks, Ed, also for your friendly and very kind personal support around Katya's surgical issues -- it meant a lot to me. And thanks to Midge too, whose warmth and compassion have always shined through.

On the Cardiology floor of Toronto's Hospital for Sick Children there are some wonderful nurses, doctors, and physiotherapists who have openly and kindly taken up Katya's care in difficult and very complicated circumstances. We have become aware through reliable means of some of the ethical struggling that went on behind closed doors and we applaud the bravery of those who stood up as advocates for Katya. Whatever happens, we believe the best decision was made based on the best information that was available at the time when a decision had to be made. Thank you to the nurses who took care of Katya: Linda, Peggy, Sandy, Lisa, Joanna, Chantal, Helen, Cathy, Sandra, Carrie, Christine, Michelle, Karen (both), Charlene, Stephanie, and other nurses whose names have escaped us for the moment. Thanks for the thoughtful assistance of physiotherapist Vanessa and occupational therapist Stephanie. Thanks to the doctors who gave vital analysis and care to Katya, who watched over her heart with great care. A large thank-you to cardiologist Dr. Gil Gross who skillfully and with great balance guided everyone through a very challenging transition soon after Katya was moved to the cardiology floor.

Very much gratitude and respect goes to Katya's cardiac surgeon Dr. Glen Van Arsdell who decisively stood out and strong to advocate for Katya's life through her parents' decision, and who with eminent skill was fully prepared to challenge the miscreant "natural history" of a combination disease that, as far as we are aware, has never before been so intrepidly faced by a cardiac surgeon in this country: Dr. Van Arsdell performed on Katya what is evidently the first tetralogy of Fallot surgical repair on a trisomy 13/18 patient in Canada, and the first in the world without a first-stage shunt. On top of that, at the request of Katya's parents, he implemented into his surgical approach a new heart-lung machine system retrofit, never before used in Canada, that lowers the machine's prime volume to a degree that significantly reduces the chances of blood transfusion, which helped to avoid significant additional risks that would have otherwise accompanied the surgery. We are so very deeply grateful to Dr. Van Arsdell and the other primary members of his team, anaesthesiologist Dr. Helen Holtby and perfusionist Colleen Gruenwald, in that Katya had been offered such a very high -- and highly customized -- standard of care. Dr. Holtby, we are so pleased to have had you taking care of our daughter, which you obviously did so well. And it was very reassuring to see you personally carrying her towards the O.R. with such tenderness and care; it had great symbolic value that remains a strong image in my mind. Thank you so much, Colleen, for your clear vision, courageous expertise, diligent work, and for your kind heart that were pivotal to this innovation becoming available for the first time in this country. You did this with such a conscientious humanity. We hope you could know just how much your work has meant to us, and hope you sense how deeply grateful we are to you.

At the PCCU (Pediatric Critical Care Unit/PICU), we continued to encounter some amazing people that help make Toronto's Hospital for Sick Children such a special place. There's lots and lots to specifically fill in here and we'll get to it hopefully soon. Expect it to be a long paragraph, as long as the tireless work that has been so expertly and thoughtfully dedicated to Katya in the great efforts that were implemented by some outstanding individuals to help her as much as humanly possible in recovery from surgery. We very much appreciated the good hands and minds that that cared and laboured for her. (Names still to be entered.)

We thank all the people who worked behind the scenes, out of our view, to voice their ethical opinions in support of treatment for Katya. We appreciate your contribution to the simple message that Katya deserves to be treated as much as possible like any other individual with such natural rights, despite the appropriate burden this does put on a responsible society and responsible individuals that are and will be part of her life. Of course, we don't know all of what went on behind the scenes, but we are aware that there are a few heroes in this regard. We hope some day you will be more at liberty to share with us what went into your efforts so we may thank you more directly.

There are many more people to acknowledge here but we'll have to come back to the privilege later. (i.e., particularly people from the CCU and onward including more 4D, as well as ER, 7B, and HSC dietician Laura.) Please check back in future after we've had a chance to expand these thanks. Better still, please be brave enough to send us an e-mail reminder of a valued contribution made by you or someone you observed among this humanitarian group that has been formed around the little girl who packs a big inspiration quotient, Katya Maria.

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