Emily’s Story
One icy-cold, snow-laden winter day in February 1993, a beautiful little blonde baby girl was born in Helsinki, Finland, the first female in forty years on her father’s side of the family. You can imagine the elation and excitement surrounding her birth, rippling across vast ocean waves back to Canada and the United States where most of her relatives lived.
Our Emily Elizabeth Anne lived and grew and thrived. She was EVERYTHING a daughter could be, with a contagious zest for life and living it to the full!
No-one in their wildest dreams, however, had the faintest inkling how it all might unravel in time.
Try to imagine the horror when, one day, what had begun so glowingly all began to mysteriously shift. Something totally unanticipated and STRANGE set in. At first, the signs were tiny, at the age of seven. For two and a half years, inexplicable symptoms increasingly presented themselves, causing unmentionable concern. Not one part of her life was unaffected. Even with extensive professional investigation, it was not until December, 2002, while the family was living and working in Shanghai, China, that all of a sudden the nine year old girl, whose spirit was already hanging by a thread because of the humiliation of all the changes occurring in her, began to lose the last of her visible abilities: her mobility.
A nightmare had set in.
When SARS was at its height (and war broke out with Iraq) in late March 2003, mother and daughter were escorted aboard a huge United Airlines jetliner and were medically evacuated from China straight back to Washington D.C. so that ten year old Emily could undergo extensive testing.
No more bandaids. Time to finally get to the root of the problem!
After 17 hours in the air, the two of us were whisked straight to Georgetown University Hospital. Thirty-six hours after our arrival from Asia, the chief paediatric neurologist sadly pulled me aside and relayed her preliminary diagnosis to me. It was quickly and unequivocally confirmed. Ten year old Emily had come down with a very rare, fatal neurodegenerative disease called MLD which in two years had almost destroyed the white matter in her brain.
No known treatment. No known cure. Prognosis: she might live days, weeks, or months… up to a maximum of three years.
Nothing would ever be quite the same again. There would never be a “getting back to normal.” A new way had to be forged. The rest of the family were immediately summoned out of China, to join us in Arlington, launching a whole new life together in North America near appropriate medical facilities. Chris was 11 years old and halfway through Grade 6 at the time; Madeleine was 5 years old and halfway through Kindergarten. It was not easy for them to be suddenly yanked halfway around the world.
Emily rapidly began to lose all her capacities. Literally from one moment to the next, she stopped walking, talking, eating. In less than a year, at the tender age of eleven, she could no longer do anything for herself. By the time the one year anniversary of her diagnosis rolled around, she was back in hospital fighting for her life in the wake of complications from her first feeding tube insertion.
The subsequent years entailed more twists and turns than most human hearts could bear or comprehend, yet also included more defiances of every dire prediction than one could ever imagine!
Through everything, her mind and disposition and spirit remained remarkably intact and her will to live was formidable! She endeared herself to multitudes of people in the medical world, at school, at church and throughout various places in the world where she was already known and loved. Emily lived at home until she passed away 14 years later in her mother’s arms at the age of twenty-six. She had become largely bed-bound and classified as palliative for years, unable to speak or write or communicate in conventional ways, yet very much alive, making a profound impact on hundreds and thousands around the world through her extraordinary journey. She was granted the gift of the gift of tenderly revealing what might otherwise be considered invisible, for anyone who had eyes to see and ears to hear… that is, the eyes and ears of the heart. She had enormous faith and so much to teach us about life beyond the surface of things. What courage she imparted to others who were trying to pick up the pieces of dashed dreams and irreversible losses in their own life! If she could find purpose in life, and meaning, and move forward, then this would hold true for anyone!
One great surprise and honour she experienced was when Toronto’s first and only paediatric hospice was named after her! This was entirely due to the inspiration of her own life, the way she was representative of so many others, and the degree to which she herself embodied the vision and mission of Emily’s House. She attended the Ground-Breaking Ceremony in person on September 15, 2011 (on a stretcher, conveyed by an ambulance) and was ecstatic when it was formally declared open on June 11, 2013. She was the first client to ever stay there, she made its first donation, and she made many cherished memories during visits to her beloved Emily’s House as time moved on!
It has been a profound, heart-breaking, inspiring, breath-taking, privileged journey. Our Emily almost died multiple times, yet each time she most unexpectedly recovered in quite remarkable ways… until the very early hours of September 24th, 2019, just after summer turned to fall, when “her time” simply came. Even the story of her passing was deeply touching.
Oh how she loved!
And how deeply she was – and still is – loved!!
written by Emily’s Mom, Lindsey