Emily’s Story

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One very cold, snowy 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.

Emily lived and grew and thrived, moving seamlessly as a little girl in and out of countries and continents as her Dad's job required.  She was utterly delightful in every way, with an unusual sense of presence, determination to succeed, full of zest for life.

No-one in their wildest dreams, however, had the faintest inkling how it all might unravel in time.

You can imagine the horror when one day something totally unanticipated, and strange, set in. At first, the signs of changes in Emily were tiny, around age 8, but enough to cause great concern to her mother. Inexplicable symptoms increasingly presented themselves, causing unimaginable emotional, social, then learning havoc. Even with extensive professional investigation, it was not until December, 2002, while the family was living and working overseas in Shanghai that all of a sudden the nine year old child, whose spirit was already almost completely broken, began to rapidly lose motor abilities, like walking, running, writing.

Towards the end of March 2003, mother and daughter were medically evacuated from China back to North America so that the ten year old child could undergo extensive medical testing.

After 17 hours in the air, Emily was admitted straight to hospital to begin immediate testing.  36 hours later, Mom was informed of the terrible preliminary diagnosis. It was later unequivocally confirmed. Ten year old Emily had a rare, fatal neuro-degenerative disease called MLD which had in two years almost destroyed the white matter in her brain.

No known treatment; no known cure.

Everything changed in an instant for this family. Emily’s Dad, older brother and younger sister immediately had to pack up and leave China, to join Emily and her Mom and begin a whole new life in North America near good medical facilities.

The long, hard road for Emily had just begun. She began to lose all her capacities, very quickly. From one moment to the next, she stopped walking, talking, eating. Hers has been a gripping, carefully documented journey, a progression of unthinkable crossroads and challenges to overcome from day to day.  She is now eighteen.  For all her independent nature, she can no longer do one single thing for herself.  At this moment, she is still alive, living right here in the city, bed-bound, enormously grateful for her rigorous daily program of Home TPN (liquid nutrition) via her PICC line, plus her g-j tube for receiving all her medications.

While her condition is palliative and deeply fragile (she has been on the brink of death five times), she remains miraculously hopeful, aware and responsive, demonstrating astounding mental and emotional health.  Her spirit soars at all the amazing love and heartfelt prayers which surround and sustain her, during the 24/7 care in her home, some of which is provided through CCAC, but most of which falls on the family.

A burden?  Far from it.  Emily's life is absolutely precious, with every breath she takes She gives, and teaches, far more than she ever receives… if one learns how to come alongside and really listen.  Her presence is powerful, effusing grace and beauty and laughter, through all the tears and brave struggles of her enormous losses which she does remember keenly.

As each of her family members is quick to acknowledge, "None of us would be the same people, without our Emily!"

Lindsey Yeskoo, Emily's Mother