8-year-old Carter Anderson has PKAN.
He’s only had his official diagnosis for about a year, as his parents were first told he had cerebral palsy. Since Pantothenate Kinase-Associated Neurodegeneration (PKAN) is so rare, it wasn’t doctors’ first guess.
It’s a story heard again and again in the rare community. Misdiagnosis.
Doctors just don’t think about zebras. Carter is currently the only person in Oregon diagnosed with PKAN.
He is unable to talk, feed himself, dress himself, or bathe himself. He also has trouble with mobility. But his parents say his smile is bright enough to light up an entire room. One of their favorite ways to get that smile? Watching Spongebob Squarepants.
Spongebob has been a staple part of the Anderson household since Carter’s birth.
He acts as a wingman for Carter, always doing the scary things first. From teeth cleaning to MRI’s to IV’s, Spongebob’s always led the way, easing Carter’s nerves about his plethora of procedures. The family’s watched nearly every episode of the series together, knowing how much joy it brings their son.
Ultimately Carter’s parents say that’s their goal in life- making him happy, and making sure every day brings him a smile.
Hearing how much Carter loves Spongebob, the Make-A-Wish Foundation just threw him a Spongebob themed party for his 8th birthday. Unlike other birthday parties though, the family asked for donations for PKAN research instead of presents. Carter can’t play with many toys, and they know how important money is for finding a cure.
That’s their ultimate goal after all–making sure this illness doesn’t affect any other children.
Hundreds of Carter’s neighbors attended the party and provided donations, laughter, and support. His day was absolutely full of smiles.
As research for PKAN continues, Carter’s parents hope their son’s story can help contribute to future treatment options. His blood is currently being studied to help find a cure. While progress is slow, they hope to see Carter walking within the next year, an AMAZING feat for this resilient little boy.
Read more about Carter’s story and his birthday party!
