Caleb Innes is like most little boys. He loves making funny faces and all things Star Wars. He lives an active, and healthy life. But when he was a newborn, doctors diagnosed him with Tyrosinemia Type 1, a genetic disorder where the body cannot effectively break down the amino acid tyrosine.
"When we got the diagnosis, we had never heard of it, and our pediatrician never heard of it," said Caleb's mother, Selina Innes.
It's classified as a rare disease, and since very few people have it, Caleb's mother, Selina, says it can feel kind of isolating.
That is where RARE Bears came to be, and outreach program developed by California nonprofit, RARE Science. RARE Science is a grassroots organization of scientists and sewists. Volunteers make bears that are gifted to children with rare diseases. Each bear is marked with a unique serial number that serves two purposes. It enrolls the child into RARE Science's research programs, to help find cures for rare diseases, and it also connects the recipient with the person who made the bear.
RARE Science partnered with the Sewing and Stitchery Expo in Puyallup. It's events like this that help RARE Science create bears, and raise awareness about rare diseases.
Chase Fairall was one of the expo attendees who stopped by the RARE Bear booth. He said making the bears with help from his mom was a lot of fun.
"You're making toys for other kids. It's great. It makes people happy. This will help them, and their fears."
Caleb is one of those kids. He and his family were thrilled to receive a RARE bear, complete with Star Wars fabric.
"It's pretty special," said Selina. "I love the RARE bear program in that it says it's cool to be rare, and here's something really positive coming to you because of that."
RARE Science is always looking for people to donate their time, talent or money.
