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Emily’s Story

February 25, 1993 – September 24, 2019

Emily was a perfectly healthy, happy 8-year old girl. Suddenly, one day, she began showing disturbing signs of serious health deterioration. The magnitude and speed at which these health issues began manifesting created emotional havoc in her family. Even with extensive medical investigation, it was not until a year later when Emily began losing motor coordination like walking and moving that she was sent for extensive medical testing. It was then confirmed that Emily had a rare, fatal, neuro-degenerative disease called MLD (i.e., Metachromatic leukodystrophy).

That day everything changed. The family was forced to leave their overseas assignment and make their way back to North America to embark on a radical new life of on-going medical intervention for Emily and a new situation for father, mother and sibling. The long, hard road ahead had just begun. She began to lose her faculties. She stopped walking, talking and eating by herself. Hers has been a carefully documented journey that has included unimaginable cross-roads and challenges to overcome.

As a young woman with a sunny and independent outlook, she nevertheless was unable to do anything for herself. She was bed-bound but enormously grateful for her supportive parents as well as her daily program of intense personal care, liquid nutrition and medication.

While her condition was palliative and deeply fragile (she reached the brink of death five times) she remained amazingly optimistic, aware and responsive, demonstrating incredible emotional and mental health. She enjoyed 24/7 medical support in her own home provided by her devoted family. She also enjoyed occasional support from staff and volunteers from Emily’s House, with overnight medical respite visits to Emily’s House, and finding great joy in her own home with art-making visits from our Recreation Coordinator, and inspired sessions with our Music Therapist. It is her spirit that inspired the naming of Emily’s House.

Living to age 26, Emily proved to be a miracle after yet another miracle.

Emily Yeskoo died early September 24, 2019, peacefully at home in her mother’s embrace.  Emily was a young woman of determination, strength and faith. She communicated more with her silence than many do through words. Another butterfly has found her wings to soar.