Blake Kinnett's incurable condition has transformed family into advocates

Blake Kinnett's incurable condition has transformed family into advocates

ALVIN — John Kinnett and his wife, Becky, never envisioned becoming advocates.

Then, their son got sick.

Around 5 a.m. on Feb. 11, 2017, the Alvin couple were sitting on their couch, drinking coffee, when Garet, John's older son, ran down the stairs. Blake, their 15-year-old, was having a seizure.

They raced upstairs. Becky held her son while John called 911.

An ambulance rushed Blake to Carle Regional Health Care Center in Hoopeston, where he was given an MRI.

"I remember the doctor pulling us out in the hallway," John recalled. "He said, 'There's something on Blake's brain, but I don't think it's cancer.'"

Blake was transferred to Carle in Urbana, where he underwent more tests over the next few days. A doctor mentioned something called adrenoleukodystrophy, or ALD.

Neither John nor Becky had ever heard of ALD. But they immediately went online to research it — and look for specialists who could treat Blake.

A few days later, they were at the University of Minnesota Masonic Children's Hospital in Minneapolis, where Blake was officially diagnosed with the disease.

According to the Stop ALD Foundation, ALD is a deadly genetic disease that affects 1 in 18,000, mostly boys and men. It destroys myelin, the protective sheath that surrounds the brain's neurons — the nerve cells that allow us to think and control our muscles.

There is no known cure.

Symptoms of the most devastating form generally appear in boys between ages 4 and 10, and most are diagnosed too late for treatment to be successful.

"Blake was 15. That's why his case is so rare," John said, adding 1 in 36,000 people are diagnosed in their teens.

According to the foundation, normal, healthy boys suddenly begin to regress, at first exhibiting behavioral problems such as difficulty concentrating. As the disease progresses, the symptoms grow worse and include blindness, deafness, seizures, loss of muscle control and dementia, leading to either permanent disability or death.

While stem-cell transplantation has shown some success in prolonging life, John said Blake wasn't eligible.

The disease "was too far advanced," he said. "They said if Blake did go through it, he could wake up blind or he may not wake up at all. ... My wife and I knew instantly we couldn't do that to him. We were going to bring him home and let him be a normal teenager."

Since then, Blake, now 17, has continued to be treated by Masonic Children's Hospital and Riley Children's Hospital in Indianapolis.

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The Kinnetts remained bewildered. Blake had no history of seizures or any health problem, for that matter.

He had been a healthy, active boy up until then.

"When he woke up in the morning, he couldn't wait to be outside. We usually had to drag him back inside when it got dark," John said, adding his youngest loved to hunt turkeys with him and Garet, fish with his buddies, ride four-wheelers and drive the golf cart around.

Blake was not only a huge sports fan, but an athlete himself, playing baseball, basketball and football. He played on a couple of traveling baseball teams, including the Illiana Chiefs from ages 8 to 13. By age 12, the team had won two state championships.

Just how tough was Blake? When he was 12, the Chiefs played in Cooperstown, N.Y. However, the week before, he broke his right arm and required a cast.

"We had to find a substitute," John said, recalling how disappointed Blake and everyone else was that he couldn't play. "Then, we started beating (the opposing team) pretty badly. We were like, Blake came all the way out here. We put him in with a broken arm."

When it was Blake's turn to bat, he swung with one arm.

"He hit the ball. He got out at first, but he advanced a runner. It was unbelievable," John said, adding a relative managed to get a picture of a teammate running up to give Blake a hug. "They were just smiling from ear to ear. Everyone was clapping for him."

"Blake was a just always great kid," John continued, his voice growing thick with emotion. "You never had to worry about him."

Blake was able to finish his sophomore year at Bismarck-Henning-Rossville-Alvin High School. But soon after returning from Minnesota, he started to lose the use of his left hand. By spring, his eyesight was deteriorating. He started his junior year in August, but left school after two weeks when he could no longer walk on his own.

The couple worked at McLane Midwest — John as a shop manager, and Becky as a controller. John left his job to become his son's full-time caregiver.

When it became too difficult for Blake to eat or take his medication orally, he went to Riley to have a gastrostomy tube put in.

"When we got back from having that, he lost his ability to talk," John said. "So in a matter of 10 months, he pretty much went from being a perfect 15-year-old to losing almost every ability he had."

When he lost his ability to speak, John said people could still ask Blake questions. He could answer yes by blinking his eyes or squeezing a hand.

"He can't do any of that now," John said. But "Blake still has his mind. We know this because he can still hear. We're always talking to him, and when we crack jokes, he smiles. So we know Blake is still here."

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What's "mind-blowing," John said, is Blake has never asked what's wrong with him or complained.

"Sure, there have been times he's been aggravated because he couldn't do something," he said. "That's just being a normal teenager, and he was always very independent. But he's always had a smile on his face that would never stop."

And when Blake's parents are with him, they never show their stress or sadness or tears — or let anyone else who's around do that, either.

"We're focused on staying 100 percent positive and making good memories with him," said John, who credits his wife for helping him stay strong.

"We lean on each other and talk to each other and make decisions together. ... We know other parents who are going through this. There are some who can't handle it, and they split. We've supported each other from Day 1."

The couple have also had "overwhelming" support from Garet, John's daughter Kaitlyn and "too many other relatives, friends and communities to count — Hoopeston, Rossville, Danville, Rantoul."

Just a few examples: Liz Braddock designed and sold more than 1,300 blue "Team Blake" T-shirts; Cara Bracewell of Impress Me Designs engraved more than 200 key chains, necklaces and bracelets with the logo; Dan Potter held a gun raffle that raised $3,000; and students and staff put on a bake sale that brought in $1,500 in two days.

The couple was able to purchase a wheelchair-accessible van with those and other proceeds.

The couple's friends Jill and Shawn Cade, owners of the Pour House in Rossville, held a benefit that raised $28,000.

"We live in a two-story house. We knew we either had to move or add on," John said. "We were able to take that money and buy the material for an addition, and my wife's nephews are contractors (Drennan Construction and Electrical). They came in and built the addition on their own time."

The Make-a-Wish Foundation arranged for Peyton Manning to send Blake a video message. And former Colts coach Chuck Pagano also sent a letter.

"He said, 'Blake, I can relate to you,'" John said of Pagano, who battled cancer. "'Don't give up. You're a fighter.'"

Alvin named the village's basketball court Kinnett Court in Blake's honor. Folks also showed their support by putting up blue ribbons and porch lights — and now, stringing blue Christmas lights.

In a short time, the family's Team Blake Facebook page, which Becky started to keep people updated, had more than 900 followers, many of whom post messages and photos of support.

"There are so many people who go on vacation, and they always take the time to take a picture in their Team Blake shirt and share it," John said. "He's been in Florida, California, the East Coast. My cousin even went overseas and took a picture, and Garet's girlfriend, Mara Spencer, took a selfie with the Eiffel Tower in the background. It's just amazing how many people have taken the time to show us how much they support him. I don't know what we would've done without the support from our communities."

John and Becky have shared it all with Blake.

"We involve him in everything," John said. "If this were someone else, he would be right there helping out."

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According to the foundation, a baby is born with ALD every 36 hours. If screened at birth, the survival rate is much greater, and doctors have a better chance of stopping the disease before it can progress. However, early detection remains a challenge.

In 2013, New York became the first state to add it to its newborn screening panel — designed to catch certain genetic, metabolic and congenital disorders in newborn babies — through "Aiden's Law," named for the son of the woman who pushed for it. While on the federal Recommended Uniform Screening Panel, it's up to the individual states whether to add it.

When Becky heard that a handful of other states had a law, she began looking into whether Illinois did.

"The thing that burns us ... is a bill was introduced in 2015," John said, his voice tight. "But it just sat there. Nobody did anything with it. So, you could have families out there with boys that have this, but they don't have a shot at" the screening.

Around that time, the couple were surprised to learn that state Rep. Tom Bennett, R-Gibson City, wanted to meet with them and Blake. Turns out, Kaitlyn had worn her Team Blake shirt to her part-time job as a bartender in Rankin, when a patron noticed it and asked her about it.

"She sat down and told him," John said, adding the man was a member of the State Line Riders motorcycle club. "He took it to Mark 'Sarg' Grogan, the president of the organization, who immediately said, 'We've got to do something for this family.'"

A couple of weeks later, John met Grogan in Rankin. The group held a poker run for Blake. And when Grogan learned Becky was starting to write state legislators, he offered to speak to Bennett.

The Kinnetts were moved when Grogan pulled up in a small bus, and he, Bennett and six other State Line Riders stepped out in Team Blake shirts.

Bennett told the couple he would research the matter and work with them on legislation for "Blake's Law." Then he learned state Sen. Mike McCullife, R-Chicago, had already introduced a bill and then an amendment to change the state's nearly two-year-long procurement process and make the necessary equipment and technology available to the Illinois Department of Public Health.

"We were grateful to tag on with him," said Bennett, a chief co-sponsor of the legislation that was signed into law in August.

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The law wasn't named for Blake because other families touched by the disease had also advocated for it, Bennett said. So he and state Sen. Jason Barickman, R-Bloomington, discussed sponsoring a resolution, designating Dec. 1 as Blake Kinnett Day.

John, Becky and Blake and about 30 others planned to be in Springfield on Wednesday, when the resolution was passed, but Blake wasn't feeling well.

So, Bennett and Becky called BHRA Principal Brett Rademacher to see about arranging a celebration at the school. The principal immediately jumped on board.

The special assembly is set for 1 p.m. Dec. 17.

"I told them I would be honored," said Rademacher, who coached Blake on the Champaign Dream traveling baseball team for a year and got to know his family.

"Blake was a hard worker, and he never wanted to disappoint," he recalled. "He always wanted to please the people around him. He's fun-loving and kindhearted."

While some friends have continued to visit Blake, Rademacher said many haven't seen him since he had to leave school.

"This is a great opportunity for everyone to see him, especially the senior class that he's part of," he said. "It's a chance to reminisce and reconnect with him."

The principal said it's also a wonderful educational opportunity for students to meet two of their state legislators and, if they aren't already aware, hear how one of their peers and his family helped pass a state law.

No, the Kinnetts never planned to be advocates. Initially, they hesitated in telling anyone about Blake's condition out of respect for their son and wanting him to have as normal a life as possible. But after a friend posted a supportive message on Facebook, they realized they had to share Blake's story to help other boys and their families.

"It's kind of bittersweet," John said of the legislation's passage, which they pushed for through their petition drive and other efforts.

"It's like a victory for us, but it won't help Blake," he continued, softly, adding he and Becky are focusing on enjoying every day with their son and making as many good memories as possible.

But "we're happy we can help other parents. We don't want anyone to go through what Becky and I have. We're not going to stop. We'll continue to raise awareness and fight this disease together."

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