By Fallan Patterson
For the News-Gazette
Gabriel Grigsby loved superheroes so much he created his own.
Bug Boy communicates with insects to help fight crime. Gabriel’s grandma even made him a costume, which he wore during home movies he filmed with his dad, Pete, and brother, Nathan.
“He just loved being on stage,” Pete Grigsby said.
Those movies will showcase the spirit Gabriel embodied during a celebration of his life today at Cornerstone Church, 2925 Canoe Creek Road in St. Cloud. The event begins at 6:30 p.m. and will feature a gospel/rock concert with all of Gabriel’s favorite songs, and awareness of the disease that took Gabriel’s life.
Gabriel, who would have turned 11 today, died on July 10 from Adrenoleukodystrophy (ALD), a genetic disorder prevalent in boys that causes symptoms such as poor memory, poorly articulated speech, deafness and progressive dementia.
“It takes away the coding around the cells in the brain so you can’t control your body,” said Dawn Grigsby, Gabriel’s mother.
In addition to the home movies being shown of Bug Boy, the event will bring awareness of ALD which includes a bone marrow donor drive with mouth swabs to gauge eligibility. A bone marrow transplant is the only known cure for the disease that affects 1 in 18,000 boys.
“There’s a possibility of two boys in our community with this,” Dawn Grigsby said.
While there’s a 96 percent success rate with a bone marrow transplant, the disorder must be detected early. With Gabriel, however, detection came too late.
“Nobody would do the transplant because it could have left him in a vegetative state,” Dawn Grigsby said.
Gabriel’s parents began noticing something was wrong with their youngest son when his grades started declining, his handwriting became illegible and his eyes turned out.
He was diagnosed with ADL in January 2012 and by the following year Gabriel had stopped walking.
“He stopped talking,” his mother said. “He went blind toward the end.”
The disease is detected by a “simple” blood test put through a specialized machine. Gabriel’s MRI also showed severe abnormalities, Dawn Grigsby said.
The family now is working with State Rep. Mike La Rosa (R-Kissimmee) to draft a bill that would require the blood test to become part of a child’s required blood work during annual physical exams. Childhood ADL is typically diagnosed between the ages of 4 and 10.
“It wouldn’t add costs to it,” Dawn Grigsby said, adding other states passed similar legislation, including New York and New Jersey. “It would just be added to the long list of things they already do.”
This isn’t the first battle Dawn and Pete Grigsby have fought for Gabriel.
The boys were adopted by the couple from their mother’s biological niece after a two-year court battle when the brothers were 4 and 6.
Gabriel grew into a fun-loving child who enjoyed performing and telling jokes. Once, when Gabriel began dancing in public, passersby gave him dollars.
His favorite movie was “Monsters, Inc” and he told everyone he was going to be an “act-tor,” his mother said.
After ADL stole his ability to speak, he used a voice box to tell jokes.
“He was just really full of life, the class clown,” Dawn Grigsby said. “We always said he’d be the little Elvis performer and Nathan would be the Colonel.”
Nathan, who turned 13 the month his brother died, is working through his grief for the brother for which he used to make a bed of pillows and blankets on the floor so Gabriel could watch movies with him.
“Nathan has had a lot of tragedy in his life. He’s doing remarkably well,” Dawn Grigsby said. “He knew Gabe wasn’t going to be with
Gabriel’s birthday celebration is today from 6:30 to 8:30 p.m. at Cornerstone Church in St. Cloud. A “love offering” of $5 per person is requested, but children dressed as superheroes will be admitted free.