How Video Strengthened Our Circle of Hope
By Kristen Murray & Nathan deBruyn
It was a passing comment that gave us the idea. A fleeting conversation with a colleague, imbedded with a concerned query about Seth. “Hey, are you guys still giving Seth all of that medication that you were giving him a while back? Does he still need it?”
It was an innocent enough question, but one that provoked much thought and had far-reaching ramifications.
Almost two years since Seth’s diagnosis with cystinosis, the disease remains a prominent feature of our lives, a lens through which every aspect of our reality is filtered. Our routine is one of juggling appointments with specialists, visits to the pharmacy and preparation of the 126 doses of medication that Seth takes each week. Each day we fend off thoughts of cysteine accumulation and the possible complications and suffering that our precious boy may experience. Managing round-the-clock administration of the unpalatable concoction of vitamins that Seth takes and striving to normalize it all in the wake of our stress and exhaustion is just what we do.
So integral is cystinosis to our reality, that I was taken aback by my colleague’s passing comment. How could something that we live and breathe every moment not be evident to others?
Nathan’s photography has always helped us capture what it’s like to live with cystinosis with friends and family. In capturing both joyous and tender moments, his work has moved many people to deeper understanding of our lives. And so, if a picture is worth a thousand words…what about a video?
We sequestered ourselves for a weekend, and thanks to the adorable subject matter we had in footage of Leif and Seth, extensive iMovie tutorials, and Nathan’s creativity and persistence, we came up with a visual portrayal of our life.
We sent our video, Living Life…With Cystinosis, out to friends and family on the eve of our Circle of Hope and began to receive responses within hours. Many expressed how they were touched by the video’s images of Seth’s medication and shaken to see the mountain of syringes that awaits him each week. Even the boys’ nanny, who takes part daily in giving Seth his vites, was shocked to see the huge volume of medication that such a wee body must contend with.
Friends and family told us that the video helped them better understand our reality with cystinosis. They gained a new appreciation of the enormous impact of the disease on our family from moment to moment. They also were grateful to have such a tangible story to share with their friends and families, evoking even more understanding and support. And indeed, as they shared, friends of friends and even strangers from Swift Current, Saskatchewan to Mexico City to Norway to Bhutan wrote to express that they were awed and inspired by Seth’s courage and strength and by our determination as a family to live a rich and joyous life in the face of adversity.
Months have now passed since we shared our video. We have been bolstered by the outpouring of love and support that has followed, and are moved and relieved when people ask questions like, “How are things going with Seth’s meds? How are you all managing? Is there anything we can do to help?”
We have been humbled by financial support, and are pleased that our video helped to inspire almost $17,000 in donations to the CRF in Seth’s honor.
We are moved by this generosity and grateful to be able to extend support to CRF research.
We watch our video from time to time, and especially on the darker days, use it as a means to rekindle our strength. For just as we created a video focused on positivity and hope, we must create a life focused on the many gifts that we have and to live life to its very fullest…with cystinosis.