I’ve followed Emmy Simmons and her family for over 25 years. The many stories, videos and photographs I took of them always included one strong emotion—love. That is precisely how this family combats adversity. When Julie Simmons was told her newborn was severely handicapped due to a rare disease that left her child without myelin in her brain, she refused to let her child die, refused institutions, and refused to give Emmy anything less than her full support. Julie tells the story often; on that morning, when she was briefed with her child’s diagnosis, she picked up her daughter in her arms, stared down at her lily-white skin and dark hair, and made a decision she never regrated. Julie took her child home and never looked back.
With her husband Wayne at her side, armed with faith and hope, along with her sister Alex, the three set out to give Emmy the best life possible.
After many attempts to improve her condition through stem-cell research in hopes of strengthening or rebuilding the neuron receptors in Emmy’s brain, the family eventually found caring for Emmy and fundraising overwhelming. Leaving the research to the experts, the family continued to nurture their deaf, blind and severely handicapped child.
Below is a glimpse into the family life of an extraordinary child. Emmy, the child with only a few hours, days, weeks, months or years to live, is now 32 years old.