One in a Million ®

ONE IN A MILLION:
PEOPLE WITH RARE DISEASES

In our “One in a Million” series of stories, NORD hopes to increase awareness of the problems of living with a rare disease and to convey that every life is important and no disease is rare when it affects someone you love.

Stephanie Hunt

After her son, Donnie, was diagnosed with a rare disorder believed to affect fewer than 1,000 people worldwide, Stephanie Hunt did the only thing she could think of to help him: She lost 100 pounds.

Cheryl Marshall

At age 10 or 11, Cheryl Marshall began to notice that people seemed to step away as she approached. Her parents were always telling her to take a bath, even if she had just taken one. Now, she knows the name and causes of her rare disorder.

Ian Young

In early Spring, 2004, Ian Young was a healthy, athletic, and active 40-year-old, thoroughly enjoying his work in one of Calgary, Canada’s finest hotels. But a virus so widespread that between 85 and 90% of all healthy adults harbor it in their bodies set into motion a devastating sequence of events that changed Ian’s life forever.

Kenny, Jordan, Maritsa, and Brittany

Approximately one in 650 babies is born with a craniofacial disorder. Without a parent advocate, children with craniofacial conditions are in a boat without a paddle, possibly missing opportunities for medical treatment, losing the confidence to develop a healthy sense of self, lacking the courage to face life’s challenges.

Jana Monaco

Jana Monaco’s career as an advocate for newborn screening began the day she realized that her son Stephen’s devastating medical crisis might have been prevented.

The Talarico Family

The Talarico family motto says a lot about living with a rare disease: “If it’s meant to be... it’s up to me!” Todd and Heather Talarico adopted that motto as a result of years of misdiagnosis of their daughter’s rare disease.