SALEM, N.H. — As the Patriots head to Super Bowl LIII, one of Julian Edelman's biggest fans is celebrating too. Grady Smith was diagnosed with a rare brain disorder several months ago; but, his latest scans are showing improvements.
"Grady is such an active athletic boy, so to hear something like that and to know what the outcome was going to be was horrifying," said Jillian Smith, Grady's mother.
Jillian's 8-year-old son Grady was diagnosed with Adreno-Leuko-Dystrophy (ALD) in August. The genetic disease damages the nerves in the brain, and it can be deadly if it's not caught early.
"We had waited three to six months, if he hadn't had found out there wouldn't have been treatment for him," Jillian said.
Smith noticed something was wrong when Grady had trouble hearing her. But, after a few visits to the doctor and an MRI, she learned Grady may have trouble understanding language from having ALD.
"Lots of boys end up in vegetative states, some have problems walking, talking, seeing," Jillian said. "It’s a very individualized disease."
After learning this devastating news, the Smith family reached out to Patriots' wide receiver Julian Edelman – Grady's favorite player.
Edelman responded with a video message.
"Grady heard you’re going through some tough times," Edelman said on the video. "But you got to remember tough times don’t last, tough people do."
Those words of encouragement are now the Smith family motto as they help Grady battle this disease.
Jillian says Grady was over the moon when he heard back from Edelman, and they continue to keep in touch. Edelman even visited Grady in the hospital a few months ago after Grady needed chemo and then a bone marrow transplant to stop the disease from progressing.
"It changed his whole demeanor and every time he was nervous or upset he would watch that video," Jillian said.
Now Grady's spirits are even higher as Edelman and the rest of the Patriots make their way to the Super Bowl.
"Grady thinks it all happened because of him," Jillian said.
And while Edelman stays in the spotlight for the big game, Smith hopes her son’s story can also be shared to help other families.
She says there’s a simple test doctors can do at birth to detect ALD in babies before it gets worse.
"It’s a heel prick it’s a very simple test," she said. "It costs around $2.50."
But hospitals in New Hampshire and Massachusetts don’t do that test automatically. So, the Smith family is now pushing for that to change.
"If something’s gonna come out of this, we need to make it positive and we need to fight for all these other little boys and their families," Jillian said. "It’s just unnecessary suffering. You can catch this."
Smith said Grady needs to be isolated this year to protect his immune system after his treatment. But he has a tutor at home while he starts rehab this week.
He plans on going back to school as a third grader next year.
Cox Media Group