Condition: Glutaric Acidemia Type 1
City, State: Grants Pass, OR
Club: North Valley High School Sparrow Club Service Hours: 392
Date Adopted: 10-03-2012
Mason's Story:Sweet-natured Mason was born on August 13, 2004. At 8 lbs. 4 oz., he appeared to be a typical, very healthy little baby boy. However, not long after birth, Mason’s mother started noticing that something was wrong. Mason appeared listless much of the time and didn’t respond to pain, such as when receiving his shots. Then Mason started having seizures and at one point, started turning blue in color.
After many tests, including genetic testing, doctors diagnosed Mason with an inherited genetic disorder called glutaric acidemia type 1. This means that Mason’s body lacks an adequate level of a specific enzyme that helps break down certain amino acids (the building blocks of protein.) Without this enzyme, these amino acids build up and cause damage to the brain, specifically the part that helps control movement. People with this disorder may experience intellectual disability as well.
Mason cannot talk, walk, crawl, or eat on his own. The physical effects of this enzyme deficiency have also resulted in Mason being diagnosed with cerebral palsy as well as scoliosis. Mason’s mother does extensive physical therapy with him to help keep his body from becoming too rigid and Mason spends a lot of time wearing a brace in order to keep his spine straight. Mason has had surgery on his teeth three times due to rapid decay caused by acid reflux and the effect of his daily seizure medications In spite of all of this, Mason is a happy child who comes to life when people pay attention to him, and he is very popular with all of the kids at his school. Young or old, everyone who meets Mason is drawn to his sweet and gentle spirit.
Mason’s family hopes to soon be able to get him an Eyegaze machine, which will help him to better communicate his needs and feelings to others.
Mason will be adopted as a Sparrow to North Valley High School. Students will work hard to raise money for Mason through community service and fundraising projects. Funds raised for Mason will help cover medical needs and travel expenses, general living expenses, and will possibly help in obtaining a more reliable vehicle for safe travel.