Condition: PKAN - Pantothenate Kinase-Associated Neurodegeneration
City, State: Butte Falls, OR
Club: Butte Falls Charter School Sparrow Club Service Hours: 1477
Date Adopted: 12/06/2016
On May 21, 2009, a precious little boy was born. Carter came into this world full of life, wonder, and with the ability to light up the room with joy.
As Carter grew into a toddler, his parents became aware of what seemed to be minor delays in his development. Carter’s speech was not quite where some would expect, and he was not showing signs of walking.
Around age two, sweet Carter underwent some further testing. The developmental delays now made sense. Young Carter was diagnosed with a mild form of Cerebral Palsy.
The diagnosis for the most part seemed to fit his condition. However, something was still amiss. After two years of noticing that Carter was degrading, a team of doctors decided further testing was needed. An MRI was ordered, that resulted in incredible findings. Seven-year-old Carter was diagnosed with a disease that affects one in a million: Pantothenate Kinase-Associated Neurodegeneration, or PKAN.
PKAN is caused by a mutated gene that is in charge of making special enzymes. Without these enzymes, iron builds up in the brain. The disease affects the ability to walk, talk, chew, swallow, or control basic movements. This disease is said to shorten the life span, but with recent improvements in medical care, a greater number of affected individuals are living into adulthood.
Thankfully, for Carter, two of the nation’s specialists for this particular disease just happen to be located in the Portland area.
This sweet child is simply pure joy. He is a fan of Superman, loves SpongeBob, his mom’s meatloaf, and he treasures his friendships.
Carter and his family are people who believe in living life to the fullest, remaining positive, and always thankful. Their joyful attitude is extremely contagious, thus making them extremely loved and supported by their small town community. Lifting this family up, and playing a role in supporting Cater through this very rare disease is a great opportunity for all involved.
Carter will be adopted as a Sparrow to the Butte Falls Charter School. Students at Butte Falls will work hard to raise money for Carter through sponsored community service and fundraising projects.