Ray Allen, his son and the fight for Type 1 diabetes awareness

The Allen family had just arrived at their Los Angeles hotel room, but it was quickly clear that something wasn’t right.

Ray Allen was busy preparing to play Game 5 of the 2008 NBA Finals, locked in on the opportunity to clinch the title as part of the second coming of the Boston Celtics’ Big 3. Yet as their stay in L.A. went on, he could tell that something was wrong with his toddler son Walker and that he was slowly getting worse.

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“Walker had been going in and out over the days since we had been there,” Allen said. “One day he was good, the next day, he was like a limp noodle where his eyes were red, he was excessively thirsty and just was lethargic. We just assumed he had jet lag.”

After a few days of cycling symptoms resembling the flu, Ray’s wife, Shannon, decided it was time to take the 17-month-old Walker to the hospital. She called the hotel concierge, who arranged for the hotel’s doctor to reach out.

“The doctor said a sentence to me that really saved us,” Shannon said. “He said, ‘It looks like the flu. It sounds like the flu. So take him in and when you go, do not leave without a blood test. Anything really scary, you can’t rule out without a blood test.”

So Shannon gathered Walker and brought him to the hospital, where the staff was convinced it was a stomach bug. Allen was told to get some Pedialyte and a baby monitor and take him back to the hotel.

“I stopped asking and I demanded, ‘Another doctor told me not to leave here without a blood test and I’m not leaving here without it.’” Shannon said. “Twenty minutes later, the doctor came in and she was white as a ghost with tears running down her face. She said that your blood sugar is supposed to be between 70 and 120 Mg/dL (milligrams per deciliter). Walker’s blood sugar was 639. He has Type 1 diabetes and he’s entered a phase of diabetes called diabetic ketoacidosis (DKA), which means his blood sugar is poisoning him to death. If he doesn’t get insulin soon, you’re going to lose him.”

Type 1 diabetes is a chronic autoimmune condition that impairs the pancreas’ ability to produce insulin and currently has no cure. Insulin is the hormone that regulates blood sugar and transports sugar into our cells to use as energy, so managing insulin levels is vital to survival for Type 1 patients. The symptoms can be difficult to recognize and can rapidly present, as they did in Walker’s case, at such an early age. When warning signs are missed, many people are diagnosed when experiencing dangerously high blood sugar (hyperglycemia) that can lead to the potentially fatal DKA event Walker survived, in which the body starts depleting fat tissue for fuel because there is not enough insulin to process blood sugar.

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This is different from the more commonly known Type 2 diabetes typically seen in adults, but increasingly present in younger people. Type 2 diabetes occurs when the pancreas still produces some insulin, but the body struggles to use the insulin and maintain blood sugar levels.

“I didn’t know anything about Type 1 diabetes,” Shannon said. “Ray and I don’t have any family history. We didn’t know anyone with Type 1 diabetes or even Type 2, for that matter. We were in the dark and we were just very, very lucky. We were very blessed and I put all my faith in God because he measures my steps and every single day I’m just grateful that Walker was spared.”

Meanwhile across town, Ray was at work.

“I remember going to a meeting that morning and I was just sitting there thinking about (Walker),” Ray said. “When you’re in the NBA Finals, everybody is more focused than any other time, so I don’t think anyone thought anything different about me and nobody knew what was going on.”

He knew at that point, back at the hospital, they had made the diagnosis and Walker was going to get the insulin he needed to stabilize his blood sugar and survive. But the man renowned for his laser focus was emotionally lost.

“I went through my routine like normal, got my shots up, I’m dialed in and everybody assumes I’m just there,” he said. “I don’t remember what I scored in the game, I just know we lost Game 5. The minute the game was over, I just went in the locker room, showered, and ran out to the hospital and I think everybody assumed I was disappointed we lost. Nobody knew what we were dealing with. But I had to go be with my little guy.”

Allen said he was fortunate it hadn’t happened earlier in the series because it would have affected him so heavily. But after Walker was treated in Los Angeles, the Allens flew back to Boston and resumed treatment there. Walker was receiving his insulin and recovering from symptoms that his parents were quickly learning were the warning signs foreshadowing a life-long journey they would navigate as a family.

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“I wasn’t there, but Shannon was and she was adamant and she fought for Walker and for our family,” said Ray. “I just sit here and I just am thankful for her because we could be living with a different story. It’s just heartbreaking. That’s why you have to advocate for your people and that’s the thing that taught me at that moment. We have to trust the people that are supposed to take care of us, but you always have to fight for your family.”

Though they made it through the biggest scare of their lives, the road from there was still treacherous. Walker had to check into the hospital for diabetic complications just as the Celtics were leaving on a road trip the following year. Then, in a remarkable bit of deja vu, he went to the hospital once again before Game 5 of the 2010 Finals between the Celtics and Lakers, only this time back in Boston.

As Walker grew older, the family became passionate advocates in promoting awareness of Type 1 while trying to learn how to live with it as a constant focus in their lives. They worked with the Celtics to distribute basketball cards with the warning signs to every fan at the Garden, especially during flu season when DKA events are harder to distinguish. They even recorded a PSA with the Juvenile Diabetes Research Foundation (JDRF) that was shown frequently on NBA broadcasts across the country for years.

“Even in the year following, we lost someone due to the same circumstances of misdiagnosis,” Ray said. “So we learned we need to talk about it and share our situation so people know that you have to get your blood tested. It’s something that has to be more commonplace.”

When Allen joined the Miami Heat in 2012, they held a golf tournament fundraiser and participated in frequent events with the nearby Diabetes Research Institute. Over time, Walker became more autonomous in monitoring his blood sugar, but still required insulin injections every few hours, even through the night.

“Walker was diagnosed 13 years ago, and before, we had to actually prick his finger with a needle and draw blood seven to 10 times a day, 365 days a year, for 13 years,” Shannon said. “These are huge numbers having to be diligent and it’s rigorous, it’s painful.”

Managing the condition required constant testing even now that Walker is a teenager, though technological breakthroughs are making their lives easier.

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“Now, Walker is completely free from finger sticks with the Abbott Freestyle Libre 2,” said Shannon, who along with Ray is a spokesperson for Abbott’s continuous glucose monitor. “He just has a little sensor on his arm that we put on once every 14 days and a little reader that he holds up to that tiny disk on his arm. Now we always know what his blood sugar level is, we have trending data and we even have alarms for when he is getting too high or low and is approaching the danger zone. It’s given him this real sense of freedom because he always has an awareness of where he is and can have better glucose control.”

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Even with enhanced monitoring capability, he still receives multiple insulin injections a day that requires careful calculation. “If you do the algebra wrong and give too much insulin, you could be staring down the mother of all messes with a diabetic coma,” Shannon said. But they are empowering Walker, now 14, to take more control of the process.

Constantly monitoring his blood sugar is only half of the challenge, as Walker needs to keep it stable by maintaining a healthy diet. Ray had long been known for his meticulous nutritional wellness and gameday meals prepared by Shannon. She would serve up chicken thighs with steamed rice and green vegetables, then he would typically have a PB&J sandwich in the locker room during warm-ups. So the family was already well prepared to adapt to the dietary concerns that come with raising a child with Type 1 — a disease not caused by unhealthy dieting like Type 2 can be, but one that still requires a careful diet to maintain consistent blood sugar.

It all built toward the creation of Grown, a 100 percent organic fast-casual restaurant focused on locally-sourced, non-processed food. The idea was first sparked when Shannon was driving down Route 9 in the Boston area when Walker had a sugar emergency and needed to eat right away. As she drove past countless fast food places, she realized she was running out of time to find a healthy meal for Walker. It pushed her to hone her skills as a head chef to develop Grown, with the Allens opening their flagship Miami location in 2016.

“We were actually doing some real growing,” Shannon said. “But with the global pandemic, we really put a halt to all those conversations. Because, frankly, as a person with integrity, I wouldn’t and couldn’t have been excited about getting someone into the restaurant business, knowing that restaurants were only doing about 40 percent of their sales.”

Healthy eating still remains a central part of their life.

“It’s interesting because when Walker was diagnosed with diabetes, Shannon and I were on this pathway towards better eating, better living through my career,” Ray said. “Then diabetes drops in our laps and we had to really hit the ground running even more. It’s fascinating, because every time something happens around the world, I always say it’s not the strongest or the smartest that survive, but it’s the most willing to adapt. I think this pandemic has forced us all to adapt.”

For the Allens, that has meant even more cooking at home and more careful management of Walker’s diabetes. The Centers for Disease Control includes Type 1 diabetes on its list of comorbidities that may increase the risk of severe illness from COVID-19, so there is no room for error with managing Walker’s blood sugar levels these days.

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“We’ve been doing our work. We absolutely are still doing walks and rides and runs for diabetes,” said Shannon. “But this year with COVID, it has been increasingly challenging for anybody living with an autoimmune condition, but specifically Type 1 diabetes.”

Back on June 16, 2008, when the Allens flew home to Boston, they took Walker to a local hospital, where they remained until it was time for Game 6 the following day.

“I think at that point, I felt free knowing that he was going to be OK and I just had to dial in,” Ray said. “As much as we had to figure out what we were dealing with in the days afterward, it just felt like we were going to be OK. We’re going to make it, it just required us to adjust.”

Said Shannon, “That day, I remember there was this general consensus that I should keep Walker home from the game. Everybody was like, ‘This guy’s getting shots. You don’t know what you’re doing yet. It’s too many people. It’s too crazy.’ He still had a little hospital band on his hands.

“But I must be this real adamant bulldog type of person because I was like, ‘Absolutely not. I need Ray to see Walker on the sidelines and know that he’s OK.”

Even with all that was going on in his personal life, Allen stepped on the parquet floor and set a new record for most 3s in a title-clinching game, going 7-for-9 from deep for a game-high 26 points. When the Celtics beat the Lakers that night and he eventually took the podium at center court clad in a world champions t-shirt, he cradled Walker in his left arm, still wrapped in a white shooting sleeve. He flashed a thumbs-up to the crowd, one he says had deeper meaning.

“I gave a thumbs up because a couple people were asking if he was OK,” Ray said. “So it was not a thumbs up like, yeah, we won a championship, but, yeah, he’s living and he will be fine.”

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Allen cherishes the photo of that moment, one that captures the pinnacle of a career and decades of work towards it, all the while embodying the moment he and his family were finally crawling out of the darkness of fear.

“When we look back at that picture, you could tell around his eyes that he had gone through some sort of trauma,” Ray said. “So as much as people were thinking about banner 17, we were inside the battle. So seeing that photo of Walker and I on stage, it was symbolic.”

The family has come a long way since that fateful June weekend. But while the battle has gotten plenty easier, when caring for someone with Type 1 diabetes, it’s never quite over.

(Top photo of Ray and Walker Allen: Jim Rogash / Getty Images)

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