Emily’s Story 2015

Emily and dad 2015

Click to view 22 years of Emily’s story in pictures

Emily was born in February, 1993, in Finland, where her family happened to be posted at that time. From there she moved to Latvia, then to the USA, and by the time she began school she was living in Japan.  Her family, which included her older brother Christopher and younger sister Madeleine, had every reason to be incredibly proud of her. Emily excelled in academics, athletics and art. She had a caring disposition, poise, and a gift for engaging people of all ages and communities.

At age eight, she began to change inexplicably.  The family moved to China in 2001, during which time she experienced a growing inability to function — emotionally, socially and physically.  Her case baffled many professionals. Her symptoms were many, affecting every area of her life, but the root of the problem remained elusive.

At age ten, Emily and her mom returned to North America, where Emily was admitted to the hospital for aggressive testing.  In March 2003, she was diagnosed with a rare, neuro-degenerative disease: Metachromatic Leukodystrophy (MLD). Her doctors did not know if she would live days, weeks or months, but expected she would not live beyond age thirteen.

The diagnosis came as a complete shock.  Her family embarked on an uncharted journey of new challenges:  Emily lost her clearance to live overseas; her dad's job in Asia was curtailed; and, her siblings moved back to America to complete their school year. Emily returned to her old school, but this time she was placed in “Special Ed” class.  Her outward symptoms deteriorated rapidly in that first year.  By March 2004, she struggled to talk, walk and do anything independently.  Confined to a wheelchair, she had a feeding tube inserted as she could no longer swallow or eat.  Since Emily had Canadian citizenship, she was granted dispensation to accompany her family to her father's next posting in 2005, in Toronto.  The local children's hospital welcomed her and provided professional care until age 17, when she transitioned to adult care at another facility.  Emily did not pass away at age 13, as her earliest doctors had expected, although she has officially been under palliative care since then.  

In 2011, Toronto’s first children’s hospice, Emily’s House, was named after her and opened its doors in 2013.  As her mom writes: “Few things give her as much joy and delight as the naming of Toronto's first children's hospice.  What an astounding privilege and legacy!  She absolutely adores every chance to visit, and has such love and fascination for the other children and teens she meets there.”

Now 22, Emily lives at home, and her mother is her primary caregiver.  Her siblings have grown up and moved on, and her devoted dad continues his career and support of the family from various parts of the world.  She is cherished by doctors, nurses and a host of others who care for her.

“She has never allowed the ravaging disease to entirely define her,” explains her mom: “Her mind is completely intact, even if its messages don’t make it to the rest of her body.  Her spirit is indomitable.  The true Emily is still safely and humbly intact within.  She has a fierce will not just to survive but to live, as fully as possible.  She implicitly trusts that her life does make a difference in surprising ways from day to day.  Her deep and tested faith leaves her with no doubts that she is a tiny yet significant part of something much larger than her own story.”

Emily’s story will broadcast across Canada and the US on Sunday, Dec 13th on Living Truth Television.  Check your local listing for television broadcast times, or view online that week at: http://www.livingtruth.ca/LT/ .