Saturday Spotlight: Ailing boy raises awareness of rare disease

SALISBURY — "I can't help it. I cannot help it that I have PCD, I can't. I wish I was a normal boy. I want to be a regular 10-year-old… I'm not. I really want to be a regular 10-year-old and not always be in the hospital. Please."

Leanne Yates-Smith found this video on her iPad a few months ago. Her now 12-year-old son, Alex Yates, recorded the video on her iPad a couple of years ago without her knowing.

Alex has Primary Ciliary Dyskinesia, also known as PCD. He was diagnosed at the age of 6 after having pneumonia nine times in one year. According to the American Lung Association, PCD is a rare genetic lung disorder in which tiny hair-like structures that are supposed to move mucus out of airways do not. The mucus accumulates, causing infections and blockages.

Alex receives treatments for PCD at Levine Children's Hospital. He also has Asperger's, a form of autism.

"He knows he's different. He used to go to school, but every time he went to school he was sick," said Yates-Smith. Because of his illness Alex is unable to go to school. Rowan County Schools sends a teacher three hours per week to work with Alex, who loves history and the military. He made the "A/B" honor roll last semester, and is looking forward to his first straight-A semester.

"I want others to not assume that people are normal just because they look normal," said Yates-Smith. She says Alex looks like a normal kid and he wants to be a normal kid. It's just hard because of his health restrictions.

Alex gets the opportunity to participate in everyday activities. He has found an outlet in the form of baseball. He and his family enjoy his participation in Miracle League, a nonprofit organization that provides special needs children the opportunity to play America's pastime.  Alex has played at the University City YMCA in North Charlotte since it began in 2011.

"They are a sweet family and Miracle League has allowed them to meet other families going through the same struggles they are going through," said program coordinator Emily Brown.

Alex has attended Victory Junction camp for three summers and even appeared in a video with Richard Petty to raise money for Victory Junction. There he has gotten ride in a hot air balloon, and hopes to zip line there if accepted this summer. He even went on a Make-A-Wish trip to Hawaii, but unfortunately was sick while there.

Alex also has an older brother, Justin Yates, who has Wolf-Hirschhorn Syndrome. This condition delays growth and development; Yates is 26 years old and weighs 64 pounds.

This summer the family plans to attend a genetic conference in Harrisburg, Pennsylvania, so they can meet other families with children who have WHS. They are hoping to visit the Hershey Factory in Hershey, Pennsylvania, so that Alex can see how the chocolates are made.

Rare Disease Day, also known as "Share Your Rare," is on Feb. 28. The Global Genes Project says there are 7,000 rare diseases in the world, and faulty genes cause 80 percent of these diseases. In Alex's case, the PCD Foundation says less than 400 people in the United States know they have the condition.

Alex's family has had T-shirts made that say "I care about rare" and have the boys' faces on them. In recognition and support of Rare Disease Day, the Global Genes Project encourages people to wear their favorite pair of blue jeans on Feb. 28.

Although Alex is sick, there are moments of brightness. Smith-Yates took a video of him dancing to "Gangnam Style" in the hospital hours before being released. In this moment, he looked like a normal kid.

Smith-Yates has set up an account to help with cost of the boys' hospital trips and expenses for the summer genetics conference. You can donate online by clicking here.

WSOC