Local boy receives ‘Oscar’ treatment as family raises awareness of rare disease
Photo courtesy of Kirk Ciaglaski
Daniel Grimes, 9, of Mancelona, is greeted by guests at his movie "premiere" Saturday night at Pathway Community Church in Mancelona. Complete with red carpet treatment, his family and guests gathered to show their support to Daniel as he fights Hunter Disease.
Courtesy photo
Pastor Dan Grimes I (far left) presents “Oscar” awards to Daniel III and his sister, Susan, following the premiere of “Daniel's Story.” Also pictured are the siblings’ parents Daniel II and Carolyn Grimes.
MANCELONA – It was an extraordinary day of Hollywood stardom for an extraordinary young boy fighting a rare disease.
Nine-year-old Daniel Grimes III, of Mancelona, was diagnosed with cerebral palsy when he was 3 years old. He will turn 10 at the end of this month.
“As he grew older his conditions worsened, which suggested a different problem,” said Daniel’s mother, Carolyn. “We had genetic testing done and in 2015 Daniel’s doctors determined he has Hunter Syndrome.”
Hunter Syndrome is an X-linked recessive disorder, meaning the defect is on the X chromosome of a DNA strand. One single gene in a Hunter patient’s DNA strand is missing or malformed. The gene helps the body code an enzyme to break down and flush out a type of large sugar molecule that the body creates. Without the enzyme, the body doesn’t know what to do with the sugar molecules and starts storing them in soft spaces like organs, between muscle fibers and in joints.
An artificial enzyme, Elaprase, was created to replace the missing enzyme through weekly infusions. It delays the progression of the disease, but it cannot cure the disorder – and it cannot cross the blood-brain barrier.
“When the disease begins to affect the brain there’s nothing we can do to change it, and that usually means a steady decline,” Carolyn explained.
Daniel has already had nine surgeries to address hearing and other complications brought on by the disease. He has an enlarged heart, ear tubes, has had surgery for a hernia, port placement, and will soon have carpel tunnel surgery.
Last Wednesday, Feb 28, was World Rare Disease Day. To bring awareness to such diseases – especially Hunter Syndrome – Daniel’s family created a video with him as the star.
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