Making Medical History

Easton Thomas is a delightful boy who brightens up any room he walks into. Like most first-graders, he loves sports, outdoor activities, and playing with friends. He is affectionately referred to as “cool Easton” by his teacher, upon Easton’s request. He is also a six-year-old who happens to be defying many odds. Easton has a rare genetic disorder called Hunter’s Syndrome or MPS II. His body lacks an enzyme that helps break down long chain sugars called glycosaminoglycans (GAGs) in the body. These sugars or GAGs build up over time in all of the cells in his body causing multiple organ complications and failures. These GAGs also build up in the brain causing neurological problems. Typically, boys with Hunter’s syndrome (the disease affects primarily males) have a very limited vocabulary and seldom progress beyond the development of a toddler. The Thomas family has seen the devastation of this disease. Easton’s older brother, who also had Hunter’s syndrome, lost all of his skills by the age of 5 and continued to decline. He eventually passed away from the neurological deterioration at the age of 12. However, Easton is currently involved in a seemingly successful medical trial that replaces the enzyme he lacks. The missing enzyme is inserted directly into his spinal canal which allows the enzyme to cross the blood brain barrier (an alternative intravenous enzyme replacement treatment is available but it does not cross the blood brain barrier). Not only is this procedure halting the progression of Easton’s disease but improving his condition. Easton is able to participate in his first grade classroom with other services provided as needed. Easton is considered a medical miracle and his mom states that “he has exceeded typical expectations by leaps and bounds.” Mrs. Melissa Thomas recognizes the significance of Easton’s enzyme replacement therapy in achieving some remarkable milestones but also acknowledges the efforts of his first grade teacher as an enormous contribution to his success. Easton is assigned to Mrs. Erin Creamer’s first grade class and many blessing are associated with his placement in this amazing classroom. When Mrs. Creamer realized she had a student with such a rare medical condition and unique challenges, she chose to be informed. With her characteristic assertiveness and tenacity, she wrangled an entire team of school and district specialists together to collectively discuss Easton and ensure he receive all the necessary services available. While Easton’s school team includes extraordinary experts, Mrs. Creamer is the driving force behind this outstanding team. Mrs. Thomas says “the work and dedication of Mrs. Creamer really blows me away. She has taken it upon herself to learn about the disease and find resources that I didn't even know about.” She also states “I know that the clinical trial Easton is involved in is making medical history and the work Mrs. Creamer is doing with him is helping to accomplish many great things.” Though an entire team is dedicated to Easton and his success, it is Mrs. Creamer who spends the majority of the time helping him thrive. Principal Mike Larsen is aware of the phenomenal job Mrs. Creamer is doing and comments “Mrs. Creamer gives of all of her time, effort, and resources and goes to great lengths to understand and support each child at his or her point of need. She works well to inform and gain additional supports for her students from fellow teachers, specialists, parents, and administrators. Mrs. Creamer cares deeply for students, and it’s easy to see her dedication in all of her words and actions. It’s an honor to work alongside Mrs. Erin Creamer.” Sierra Bonita is fortunate to have such an incredible teacher and just as lucky to have this remarkable student!