Condition: Williams Syndrome
City, State: Central Point, OR
Club: Cascade Christian High School Sparrow Club Service Hours: 565
Date Adopted: 2/25/2013
Hunter's Story:Hunter Johnson, a lively and enthusiastic 12 year old, lives with a rare genetic condition called Williams Syndrome, that only 1 in 10,000 people live with worldwide. Williams Syndrome is caused by a small deletion on the 7th chromosome and usually results, as with Hunter, in an unusually friendly personality, developmental delay, and many serious medical concerns, especially of the cardiovascular system.
In Hunter’s case, tests have revealed several heart conditions including supervalvular aortic stenosis, pulmonary stenosis, and multiple VSD’s (holes in the heart). Although Hunter’s heart conditions are presently stable, frequent heart check-ups will be required as he continues to grow.
Hunter has already endured multiple surgeries. He was only four months old when his family learned he needed a heart catheterization due to several complications. He has also had surgery to have his tonsils and adenoids removed, has had ear tubes, and within the last year he had back surgery for a tethered spinal cord. In addition to all of these procedures, Hunter will soon undergo an extensive foot and leg surgery, which is needed to correct the right foot from curling inward and to reposition his leg. These surgeries are especially frightening and difficult because those with Williams Syndrome can experience sudden death with anesthesia.
Hunter also lives with scoliosis (progressive curvature of the spine), and receives treatment for this (along with treatment for his foot) at Shriner’s Hospital in Portland.
Between appointments at both Shriner’s and OHSU, Hunter and his family travel to Portland an average of four to five times per year.
Despite his serious medical conditions Hunter lives his life full of joy and brings happiness to others. Hunter loves being outdoors, playing basketball, swimming, playing hackie sacks, and video games. Hunter is very proud of the medals he has won for running in Special Olympics, and will gladly show them off when asked.
Cascade Christian High School has committed to making Hunter their Sparrow for the 2012/2013 school year. Cascade students will work hard to support Hunter and his family (both financially and emotionally) through sponsored community service and