Feb. 29 is the rarest day on the calendar, and I invite The Times’ readers to do something meaningful to mark the day. On the last day of February, millions of people around the world observe Rare Disease Day. Each of us knows someone with a rare disease or disorder. My daughter, Zemirah, was born with a rare, life-limiting genetic disease known as peroxisome biogenesis disorder-zellweger spectrum disorder. She is brave and beautiful 6 month old who without a miracle will be lucky to see her second birthday.

In our country, rare diseases affect 1 in 10 people. The 7,000 known rare diseases combine to affect 30 million people, making them not so rare after all. Approximately 50 percent of people affected by rare diseases are children, and 30 percent of children with rare diseases do not live to see their fifth birthday. In fact, rare diseases are responsible for 35 percent of deaths in the first year of life.

Families often have trouble getting access to life-saving medical treatment or other services because their insurance, medical, elected and other officials may not be familiar with their diseases.

Some, such as cancer (most types of cancer are rare) and Lou Gehrig’s disease (ALS), are well known to the public. Many others are not, and you can imagine the loneliness of having a disease most people have never heard of, has no treatment, and is not even being studied by medical researchers.

Raising public awareness truly makes a difference. It gives families hope and can lead to new, life-saving treatments. I encourage everyone reading this to get involved by visiting the website www.rarediseaseday.us on or before Monday to learn about events in your area and what you can do to support individuals and families impacted by rare diseases. You can also show your support by wearing a blue jean ribbon and spreading awareness.

Rachael DeLaria
Lula

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