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4-H’er raises awareness about rare diseases
RAYMOND, Miss. -- Rylee Plemons was one of several Mississippians who met at the Mississippi State Capitol Feb. 26 to tell their stories and raise awareness about living with a rare disease.
The 10-year-old Stone County 4-H member was diagnosed with Multiple Epiphyseal Dysplasia, or Fairbank’s disease, five years ago. He began sharing information about the degenerative joint disease through the Mississippi State University Extension Service 4-H program.
“The more people who know about it means that maybe we can get more people who study it,” said Plemons, who attended the meeting at the Capitol with others who also belong to the Rare Action Network, which is supported by the National Organization of Rare Diseases.
The group gathered at the Capitol to speak to legislators about the need for a rare disease advisory council, which can help legislators understand how legislation impacts people with rare diseases. Plemons and his mother, Julie Plemons, know increasing awareness is important, and it is why he began sharing information about his disease.
“Nine out of 10 rare diseases have no organized association to help bring awareness and help those diagnosed have a collective voice to get needed research, funding and other support,” Julie Plemons said.
His visit to the Capitol included attending the signing of a proclamation by Gov. Tate Reeves declaring Feb. 29 Rare Disease Day in Mississippi. The board of aldermen in his hometown of Wiggins also recently declared the same day as Rare Disease Day in the town.
Julie Plemons said she wants to teach her son to advocate for himself. She said his involvement in 4-H has been a great way for him to learn to interact with others and share information about his disease.
Rylee Plemons participated in the youth organization’s Project Achievement Day in summer 2019. For the regional competition, he put together a display about his disease to help people learn about it and him.
“We homeschool, and 4-H has definitely kept him social,” Julie Plemons said. “It has increased his self-esteem and helped him learn to speak in front of strangers or to strangers.”