Sophia (w/ Richard Sachs)
social life & social media
In this talk, Karen Herzog and her husband, Richard Sachs present an incredible story of their late daughter, Sophia. At 10 months old, Sophia was diagnosed with Niemann-Pick Disease, a rare lysosomal storage disease that affects only 8-10 children in the world at any one time. Karen and Richard share their own model of integrative care--they opened their home to a wide community, kept detailed collaborative records of Sophia in a Binder of Purpose, and even started their own clinical trial of at their house.
Journal | Photos
In my late 30s I was working in architecture design and web technologies industry and I was defining myself mostly by work. At the same time ( 00:28 I was really hungry for this deep meaning in my life?), that’s when Sophia came along.
So I started to find myself as a parent, a teacher and I started to reconnect with my creative self.
When she was born like any parents do we started to chronical her life, all the normal ways, photos and videos and all the cards and emails that families sends to you and the thank you cards. As it turns out in the process of life logging became a story and a way for us to define Sophia, our family, a community and also myself.
So when Sophia wasn’t meeting her milestones and having repeated infections, she was in essence she was in medical terms of failure of drive. After three painstaking months of tests she was diagnosed with (01:31 unclear) Type A.
She was actually one out of eight to ten children in the world that at any given time who has this rare genetic metabolic disorder, it’s also known as (unclear 01:41) disease and also (Arginosuccinic aciduria? 01:46) disease. Her life expectancy was two to three years. Well, needless to say we were devastated. Our world view was totally disrupted and we started taking a different path. (So a health person doesn’t?) offer much for a family like ours. Physical therapy, occupational therapy, grief counselling, and one doctor even suggested that we just go and have another child.
So we really wanted to maximize Sophia’s quality of life and there was just this mountain of work and it was just absolutely humbling and I was actually taken to my knees. But at the same time I intuitively knew that this was really not about her and it really wasn’t about our family, but it was really about all of us.
So we started to build a model of integrated care and which really helped to recruit people in addition to my sales background, and we started to use this model to also make strategic medical decisions. And the model actually helped us all make sense of what was actually going on. It helped us understand all the therapies that we were doing with her. It helped us to see how they will all interrelate, and how they all actually were of equal importance. My philosophy was there was one medical system that has its strengths, one has its weaknesses and it all actually complete one another.
So we were actually just trying to bring some order to our lives and you know, remove the chaos and the uncertainty.
So we started record-keeping, and as you can imagine it was like mountains, and mountains, and mountains. There was lab tests there was x-rays, reports, just an amazing amount of record-keeping. We started to do all the inputs and outputs, her chemistry. All of her caregiving and even like changing her clothes and brushing her hair we documented just to show that she was having a life.
So it wasn’t really easy to do, and at first we started out tracking using a paper-based system, and I got really frustrated thinking wouldn’t it be great to have it all digital. Well, try teaching a bunch of nurses at your home, how do you excel while you’re trying to care give for a very medical fragile child; it didn’t work.
So we went back actually to a binder that had a photo of Sophia on it. This binder became the solidarity for our community. It became this binder of purpose, and it became a binder where everyone could share the information back and forth, because frankly I was for kind for all the information in the community, but that binder helped us streamline all of these communications and everyone instead of asking, what did the doctors say, what did so-and-so say, they got to a binder and it was open to anyone in the community. Even like our neighbors could go to her binder and we totally believe in transparency. We really had nothing to hide. So the binder became as I said (unclear 05:13), just having in our lives and also gave us this sense of hope that we really needed.
So then we started doing, a friend came over and saw Richard and he was this scientist nerd and we called him Mr. Science and he actually had several biotech companies. He walked across the street and said, you know, Richard I just actually learned about this stuff (code mutation) therapy and you know what, maybe they can give me some of the drug and they can give it to me at the back of their door. I was like fat chance. So he was like, well let’s go research all of the aminoglycosides approved by the FDA and maybe we can just start doing something at the house. So we (unclear. Sera 5:58), Children’s Hospital twice and went in front of their ethics committee, and we started our own clinical trial at our house.
And imagine, we have to document even more so, but what was really interesting is we found all of these different ways to interpret the information. And from that and other therapies we were doing with Sophia, we did six case studies so we did one – two of them were represented in China, one was integrative medicine and the experimental pharm code genomics. The other one was traditional Chinese medicine for diagnosis and treatment of NPA. And then we did (unclear 06:35) therapies at the end of life and her aquatic therapist did one on aquatic therapy and there was several others.
And (Unclear 06:46) really done for us and not only the document and tracking Sophia but to make meaning from what was actually happening in all of our lives and to share that with the rest of the world.
So there was this greater collective identity that also emerged from the process of doing all of this, documenting, tracking, and analysis. It also helped us to again on a scientific level, the psychological level, and especially on a spiritual level.
So then we thought we were going to lose Sophia when she was 22 months of age, and a friend who is also an artist and a chaplain, she came over to our house and started a prayers flag project. Well, Sophia defied the odds and she lived for two and half years, and this prayer flag project grew and grew and grew and actually won an award from the Society of arts and health care in Washington DC. And all it was was just a simple piece of cloth and you just took feathers, and markers, and pens and glitter and made flag. You said something that in words alone could not express. Something that was deep in the heart.
So the collection of flags they hung in our house, and there was just these banners of love and passion and wisdom. And the work really helped us bring awareness to Sophia and awareness of the community, the flags that were made at home, they were made at work. And this already being sent from other parts of the world, friends started saying I’m travelling to Tibet, I’m travelling to Switzerland, I’m travelling to Sofia, Bulgaria and can I take a flag as a symbol. So they went all around the world
After Sophia passed away, Richard and I were invited to participate in a project actually by Gensi Corporation for the (unclear 08:45) Disease community. And what we did. We started cataloguing and chronically like what happened in Sophia’s life and what if from an artistic perspective was meaningful.
We came up with over 30 projects, 20, of which are on this poster that we did and entered it into the competition. And it really opened up people’s hearts and minds and it actually showed a group, an identity that actually merged that had emerged in Sophia’s life. And it really wasn’t just about her anymore and it was really all of us.
And at the same time, cause a team of filmmakers, and photographers who were actually documenting Sophia’s life in our home. One filmmaker did 70 hours of filmmaking, and a document photographer did over 1500 photographs and not to mention all that dad took. And it really was a way for us all to explore what had happened in the community. And what was really interesting is that people were photographing and filming, people’s identity started to change. They started to have this more authentic, more spontaneous manner about themselves. And they started to kind of see that this was for posterity that there was this collective authentic intelligence of learning that they wanted to be part of. So people started asking me if they could be in the film.
So again, it was this really surprising way of documentation to form some of the parts are greater than the whole. So it began as a story of Sophia and our families life evolved into a larger collective story transformation.