By Assemblywoman Melissa Miller

This October will mark 20 years since my daughter Melanie lost her life to Cockayne Syndrome. In honor of her and all the children who have suffered from this disease, I am proud to announce my plans to propose a resolution this upcoming legislative session to make October Cockayne Syndrome Awareness Month in New York.

Cockayne Syndrome is a rare and fatal genetic disorder. It is characterized by poor growth, microcephaly, premature aging, extreme sensitivity to sunlight, moderate to profound developmental and neurological delays, and an extremely shortened lifespan. In some children, it is noticeable at birth, but in others it doesn’t become apparent until they are almost a year old.

My family is part of a small percentage, 1 in every 2 million births, affected by this disorder. In October 1990, I gave birth to a beautiful baby girl named Melanie. We knew within the first year that she was not meeting milestones and was developmentally delayed. By age 3, she began losing some of the milestones she had worked very hard to reach. Due to the rare nature of the disease, Melanie was not diagnosed with type 1 Cockayne Syndrome until she was 5 years old. While those with type 1 can live until they are 15 or 20, Melanie died on October 26, just two days after her 7th birthday.

After Melanie’s death, I learned of other families in New York with children diagnosed with Cockayne Syndrome. Unfortunately, many of those kids have since passed away, but there are several precious children still with us, living right here in New York. They need and deserve our help, and we must bring much-needed awareness to Cockayne Syndrome and other disorders, diseases, and illnesses that affect so many innocent children and their families.

This is why I plan to have next October made Cockayne Syndrome Awareness Month. Individually, each of these disorders only affects a small portion of the world’s population, but together they affect more lives than anyone realizes. It is important for us to educate ourselves and come together to help find cures for these terrible afflictions to stop more children, and their families, from having to suffer their painful effects. v

Assemblywoman Miller represents the 20th District, which consists of parts of Nassau County, including Atlantic Beach, Long Beach, the Five Towns (Inwood, Lawrence, Cedarhurst, Woodmere, and Hewlett), Oceanside, East Rockaway, Island Park, Point Lookout, and Lido Beach.

 

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