Brylee Smith was in Montgomery on Tuesday to accept a commendation from Gov. Robert Bentley.
Brylee was recognized for establishing a nonprofit, Bry’s Art Rewards Kids (B.A.R.K.), after being diagnosed with a rare autoimmune disease in November.
Bentley, a certified dermatologist, spent five minutes with Brylee discussing B.A.R.K. and Brylee’s disease, juvenile dermatomyositis.
Brylee said meeting the governor was “awesome” and that she was especially impressed by Bentley’s knowledge of JDM.
“He knew what it was and actually knew how to pronounce it! He also said that he had diagnosed a few people with it before,” Brylee said.
JDM is diagnosed in only three children out of a million each year. Brylee is one of two children in Walker County who have the disease.
It occurs when the immune system, which is supposed to fight infections, starts attacking the body’s healthy tissues and cells.
Symptoms include muscle weakness, rashes and stiff and swollen joints. Exposure to the sun is harmful because it causes flare-ups.
There is no known cause or cure.
Brylee gave the governor a piece of her artwork as well as shirts for B.A.R.K. and APEX and a Cure JM bracelet, shirt and hat.
“It may mess up my hair,” Bentley said jokingly as he put on the hat for pictures with Brylee.
Bentley later sent Brylee a personal letter thanking her for the gifts and said he was glad to accept them on behalf of the state of Alabama.
Proceeds from the sale of Brylee’s art have been used to buy large remotes and a craft cart for Children’s Hospital, where Brylee receives monthly infusions.
She is currently involved in a project to raise funds to rebuild APEX, an all-accessible playground that was severely damaged by fire on March 20.
State Sen. Greg Reed (R-Jasper), brought Brylee to the governor’s attention.
Reed said he has a personal interest in the Smith family because he attended college at the University of Alabama with Brylee’s father, Lee.
Lee Smith was killed in a car accident in 2006. A fund established in his memory supports programs focused on youth.
The Samuel Lee Smith Advised Fund awarded $11,750 in grants recently to provide area children with swim time at Memorial Park Natatorium, sports scholarships, shoes and coats at Christmas and transportation to doctor’s appointments.
Reed said he did not want the efforts of Brylee and her family to go unnoticed.
“I think it is important to recognize people like Brylee who choose to give back to the community when you would think they would be the ones looking for the community to give something to them,” Reed said.