“Tough times don’t last. Tough people do.”
It’s been 10-year-old Grady’s mantra for the past three years.
In the summer of 2018, Grady’s family noticed he was having trouble hearing. He’d complain that empty restaurants were too noisy and suddenly seemed confused by simple sentences. After passing a series of hearing tests, Grady’s family grew concerned that the issue was neurological, rushing him to the emergency room. Despite receiving a clean bill of health there, Grady’s family remained unconvinced, refusing to take him home without a brain scan. That scan uncovered a lesion on Grady’s brain, leading to the diagnosis of adrenoleukodystrophy, a rare and potentially deadly genetic condition that primarily affects young boys.
Adrenoleukodystrophy, or ALD, damages the membrane that covers nerve cells in the brain and spinal cord. When this membrane is damaged, signals from the brain can no longer receive or relay information, causing impaired body function. For Grady, this means he hears perfectly, but is unable to comprehend language or sounds.
Grady’s parents, Jeff and Jillian, were inconsolable. An internet search revealed that there is no cure for ALD and that it would likely progress rapidly, leaving their son in a vegetative state. Jeff wondered if each toss of the football with Grady would be their last.
Fortunately, Boston is a hub for ALD research. Grady’s doctors across a network of Boston hospitals felt confident that although they could not reverse the damage ALD had already caused, with a bone marrow transplant they could halt the disease and stop its progression.
Dana-Farber Cancer Institute is part of Grady’s all-star team. Although most associated with cancer, the Institute’s faculty specialize in a host of other medical conditions, including ALD, genetic immunodeficiencies, HIV/AIDS, metabolic disorders, vascular anomalies, and cardiovascular diseases in pediatric patients.
“It’s reassuring to live so close to Boston,” says Jillian. “The medical marvels happening every single day here give me hope. I truly believe that there will be a cure for ALD one day, and I believe it’s going to come from Boston.”
Within weeks of his initial brain scan, Grady’s Boston care team found him a bone marrow match. Less than a month after the terrifying diagnosis, his family moved into the hospital room they would occupy for the next 30 days—leading up to, during, and post-transplant. Chemo to prepare for the transplant started the following morning.
“We did not know if Grady would even make it through the transplant,” recalls Jillian. “And if he did, would we be bringing home the same boy that we brought in?”
Not only did Grady survive the transplant; it saved his life.
Despite the challenges brought on by ALD, Grady is now relearning English, lip reading and internally translating the muffled sounds he hears. He is learning how to adapt to the world around him, and he still plays sports, goes to school, and hangs out with friends. “He is going to do big things,” asserts Jillian. “I’m just here to help him along the way.
“Grady is still the same beautiful kid that he was before August 2018,” she continues. “He’s smart, funny, and so caring. Even though he struggles sometimes and mourns his life prior to ALD, he is still that same little boy with the same heart.”
Jillian, however, is not the same person she was the day she first heard Grady’s doctors utter “ALD.”
“The things that were important to me then aren’t anymore. When you hear that you will most likely outlive your child, you die on the inside. I refused to accept that, and here he is today.”
Jillian has become a tireless advocate for her son and other ALD patients. She has connected with ALD families across the globe, providing support and advising them to stay off the internet and listen to their doctors. ALD is not the death sentence it once was.
As soon as Grady was stabilized after his transplant, she successfully worked to get their home state of New Hampshire to add ALD to the newborn screening panel. When caught early, ALD can be stopped in its tracks. “So many boys will be saved in New Hampshire because of my son,” Jillian says.
At Dana-Farber’s Jimmy Fund Clinic, Grady pranks his nurses with theatrical screams of agony when they take his blood—a virtually painless procedure, considering all Grady has been through. He plays video games, does crafts, and reassures other pediatric patients that tough times don’t last. “Stay strong,” he reminds them. “I know it’s scary. You have the best doctors and nurses.”
This year, Grady is the patient ambassador for Jimmy Fund Little League, a fundraising initiative where players extend their baseball season to raise money for Dana-Farber. It’s a perfect fit for Grady, the self-proclaimed sports nut who cheers for all Boston teams; plays football, baseball, and basketball; and prides himself on being a good team player.
Most of all, Grady wants to focus on his second chance at life. “I’m just a normal kid. You can’t catch ALD. ALD is just something I have, but it’s not all I am,” he says. “I’m still funny and silly. I don’t want anyone to feel bad for me, because I’m doing okay, and soon, I’ll be doing even better.”