A nine-year-old Pokemon-loving boy named Jonah is the inspiration for an initiative aimed at educating physicians about ultrarare diseases.
Jonah was diagnosed in 2011 with one of those ultrarare diseases, Sanfilippo Type C, a genetic disorder for which there is currently no cure.
His parents, Jill Wood and Jeremy Weishaar, founded the Jonah’s Just Begun foundation, which has just launched the game, called Mission Hide & Help.
It’s inspired by kids finding rare cards in their Pokemon collections. In this social media campaign, they are encouraged to take one of those cards in a special sleeve and hide it in their doctor’s office during their next visit. When the pediatrician finds the card, it encourages him or her to consider the possibility of ultrarare diseases in patients.
“The earlier you find them, the higher the chances to find a cure,” the sleeve reads.
The game, invented by Steve Lundberg and Eduardo De La Harran, targets doctors since diagnostic delays are common with Jonah’s disease. Early symptoms, such as cognitive delays and hyperactivity, can mimic other conditions.
"Most doctors see cognitive delay and assume autism, the catch-all for 'I don't know what's going on with this child,’” said Wood. Many parents accept their doctor’s diagnosis and it isn’t until parents and practitioners start to see uncharacteristic symptoms that they second-guess the autism diagnosis, she said.
Wood says she is grateful Jonah’s pediatrician, Hai Cao, M.D., did not ignore his symptoms and was able to diagnose him at 22 months of age.