Six minutes into the Blue Jackets’ game against the Colorado Avalanche, Blue Jackets forward William Karlsson crashed into the far side boards as he passed the puck into the offensive zone.
Seven-year-old Hudson Phillips was sitting rink side. He turned to his father, rested his hand on his dad’s shoulder and asked “Who’s that?”
“That’s Karlsson!” Eddie Phillips answers.
Minutes later, Jarome Iginla checked Cody Goloubef into the glass directly in front of Hudson, his dad, his 10-year-old brother, Grant and mom, Amy.
Hudson reached out his arm and cocked his head to the side: “what was that?”
Eddie points and answers “Goloubef!”
Eddie grew up a hockey fan and passed that love on to his sons. Grant is in his first year playing the sport. The family has sticks and nets at their house for street hockey and Hudson plays a bit of stick and puck and can take a few shots on net.
For Hudson, experiencing NHL hockey means getting high fives from Blue Jackets players as they take to the ice, feeling the vibrations of the hits, the cold of the ice, hearing the music. It means listening to his dad narrate plays and the iconic sound of the cannon.
Going to a Blue Jackets game allows Hudson to use all of his senses – except his sight.
Hudson was born in August of 2008. He entered pre-Kindergarten in 2013 but his teacher and parents noticed Hudson fell behind and struggled with number and letter recognition. Amy and Eddie took their youngest son to the doctor and discovered he was already legally blind in both eyes, but that could be corrected to 20/50 with glasses.
Recommended visits to a retina specialist revealed that Hudson, then just five years old, seemed to have a degenerative retinal disease.
“We were told, at the end of 2013, that he would likely lose all of his vision, or most of it,” Amy said. “But the good news was it would progress very slowly and by the time he would lose his vision, maybe there would be some options for treatment.”
|Hudson (left) with brother, Grant, and mother, Amy, at Nationwide Arena. |
But in less than a year’s time, his vision had deteriorated rapidly and he was diagnosed with 20/800 vision with or without glasses. What people with normal vision see from 800 feet away, Hudson could only see from three inches away.
“His vision just plummeted,” Amy said. “The doctors said ‘maybe this has a neurological component to it.’”
Concerned, the family took Hudson to the Cleveland Clinic where he underwent a series of tests.
In January 2015, Hudson received a diagnosis of Juvenile Batten’s Disease, a disease that affects just 2 to 4 of every 100,000 live births in the United States, according to the National institute of Neurological Disorders and Stroke.
Batten’s first presents as progressive blindness and those affected suffer progressive neurological impairment including seizures, personality and behavior changes, dementia and loss of motor skills, according to the Batten Disease Research and Support Association (BDSRA).
There’s currently no cure for Batten’s, and the rarity of the disease doesn’t command a large amount of funding for research. Most children diagnosed with Batten’s have a life span that extends just to their late teens or early 20’s.
“It’s just a horrific disease,” Amy said. “If you can imagine ALS meets Alzheimer’s, it’s not only physically debilitating, it’s also mentally debilitating.”
But for now, Hudson only faces the challenges of hindered sight. He walks with a cane but does not hesitate to learn his way around a new space and navigate freely. His family has chosen not to tell him about the full extent of his disease. Instead, they focus on making every moment worthwhile.
“We’re pursuing everything we possibly can medically and spiritually,” Amy said. “When the day comes that we have to deal with the next thing that’s what we’re going to do. Our philosophy is to embrace life and everything it’s giving us.”
And what life gave this family on Jan. 16 was a night with their favorite team, the Blue Jackets, and their favorite player, defenseman Jack Johnson.
The family sat in the front row opposite the visitors’ bench to take in the 2-1 Blue Jackets victory. The game-winning goal came with just 1:07 left to play – scored by none other than Johnson.
The family, clad in their Johnson No. 7 jerseys, jumped with excitement. Hudson was so excited that he lost a tooth. Big brother Grant pressed his face to the glass to celebrate the win and watch Johnson earn second star honors, while checking in on his little brother to make sure he understood what was happening on ice.
|Hudson (center) stands with his dad and brother watching the Blue Jackets. |
“It’s pretty special,” Grant said about sharing the night with Hudson. “It’s just fun to have experiences with him.”
But the night wasn’t over. The Phillips family headed underneath the bowl into the arena’s event level, where they collected autographs from Jackets players as they filed out after the game. And the best was saved for last.
Johnson came out to spend time with the family, sign their jerseys, and give some playing advice to Grant.
“It was by far the best moment in Blue Jackets history,” Grant said about the chance to meet his favorite player after his game-winning performance.
“We have to have that stress relief,” Eddie said, about the opportunity to share the night at the game with his family. “It helps us.”
The Phillips strive to enjoy every day as best as they can, and that Saturday evening was not about Hudson’s condition – it was about time spent together as a family, dinner in the Red Line Lounge, and a little brother wanting to like what his big brother likes.
“It’s an incredible experience for us to be able to have a common interest and share something like this and it’s so hard with Hudson’s vision limitations,” Amy said. “This is going to be great for him because he went to the Blue Jackets game.”