Emily’s Story

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. She is now 19 years old. Even though she is a young woman with a sunny and independent outlook, she nevertheless can do nothing for herself. She is 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 is palliative and deeply fragile (she has been at the brink of death five times) she remains amazingly optimistic, aware and responsive, demonstrating incredible emotional and mental health. She enjoys 24/7 medical support in her own home provided by her devoted family. She also enjoys occasional support from staff and volunteers from Emily’s House. It is her spirit that inspired the naming of Emily’s House.