SALEM, New Hampshire — Considering he's only 8 years old, Grady Smith has long been obsessed with New England Patriots' wide receiver Julian Edelman. 

"He was Julian Edelman the year before for Halloween," said Jillian Smith of her oldest son who regularly dresses in Edelman's trademark No. 11. 

Last August, after Grady was diagnosed with the potentially deadly, genetic disease ALD, his father decided to reach out to Edelman on Instagram, hoping he could buoy his son's spirits and energize him for serious treatments he was about to face. 

On Sept. 24, 2018, while Grady was in Boston Children's Hospital, in walked the "Squirrel" himself. 

Edelman didn't come to visit the whole floor or see anyone else at Children's. He just stopped by and hung out with Grady. 

"It was hard for Grady to really react because he was in such shock," Jillian said during an interview at the family's Salem home Friday.

The hospital visit was just the beginning of Grady's continuing friendship with Edelman.

Using the social media site Instagram, the two share video clips with each other. Edelman, after many Patriots games, will send Grady an inspirational video. 

"It was a tough one but we got it done, Bubs. We got it done," Edelman said to Grady in a recent video clip. 

Edelman also has drilled one of his catch phrases into young Grady's mind:

"Tough times don't last. Tough people do," Edelman repeatedly says to the boy, a second-grader. 

Edelman continually encourages the boy to "keep grinding and keep fighting." 

Jillian and her husband, Jeff Smith, a Methuen police officer, have adopted the phrase as the family's mantra in Grady's ongoing fight. 

Adrenoleukodystrophy, or ALD,  affects 1 in 18,000 people, mostly boys and men. 

This brain disorder destroys myelin, the protective sheath that surrounds the brain's neurons — the nerve cells that control thinking and muscles.

Grady was diagnosed last August after his mother suspected he was having difficulty hearing.

His hearing is actually fine but he now suffers from auditory processing issues triggered by ALD. 

"He has a hard time processing language," Jillian explained. "It's like you are speaking a different language." 

The boy underwent a bone marrow transplant last fall and his prognosis is "really good," his mom said. 

"There is no cure for ALD. But bone marrow transplants help with the progression of the disease," explained Jillian, who worked for 14 years in the emergency room at Holy Family Hospital in Methuen. 

Grady's doctors don't expect — and the family is hoping and praying they're right — that the disease will progress any further than it has.

"That's not a usual outcome," she said. 

For the next year, due to the bone marrow transplant, Grady must be isolated and cannot attend his elementary school, the Barron School. 

His days are still full though as he works with a tutor and also attends physical therapy and rehab.

Jillian, meanwhile, wants to expand knowledge about ALD, developing literature for parents and family members of ALD patients, and mandating "heal prick testing" of babies in Massachusetts and New Hampshire for the disease.

"The test is $2.50," she said. 

Someday, and hopefully someday soon, Grady says he's hoping he can spend the day with Edelman. 

For now, he routinely watches and listens to his videos from him. When he's stressed or nervous, he watches that very first video Edelman sent him telling him to be "tough." 

"And he believes," Jillian said. 

She thanked their family and friends, stressing they couldn't get through this without them. Grady has an older sister, Skylar Ralston, 19, and brother, Colin, 4. 

And, she said, she can never, ever say enough good things about a professional football player, a Super Bowl champion and world renowned athlete, who has taken the time to encourage her little boy.

"He's like the sweetest thing in the world. ... And he has no idea how much he's done for him," she said.

Follow staff reporter Jill Harmacinski on Twitter @EagleTribJill. 

 

HOW TO HELP GRADY

A fund has been established to help Grady Smith and his family with costs associated with his care for the genetic disease ALD. 

Check out gofundme.com/goodness-for-grady if you would like to donate. 

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