Caleb Johnson hangs out with Finn

Caleb Johnson hangs out with Finn

Disease can’t bench Caleb

Some days, Caleb Johnson pretends he’s Ryan Kesler of the Canucks. On others, he tells people he’s Colton Sparrow of the Vipers.

The energetic, fun-loving and well-spoken three-year-old lives and breathes hockey 24-7. He may, however, not be able to see Kesler and Sparrow, his cousin, play for much longer as his eye-sight deteriorates daily.

Caleb was born healthy but at age two, when his older sister, Jennifer, was being treated for a lazy eye, doctors noticed worrying shapes in Caleb’s eyes. 

He was diagnosed with glaucoma, a condition whereby pressure within the eyeball causes gradual sight loss.

“He is the first child this doctor (Christopher Lyons at B.C. Children’s Hospital) has ever seen get glaucoma (after birth),” said Tara Johnson, of her son. 

“We saw Dr. Lyons last August and two days later, Caleb had eye surgery.”

Caleb has endured six surgeries, which include a rather painful procedure where a valve drains the eye to relieve pressure. 

During the diagnosis in August, Dr. Lyons said he thought the glaucoma had started about two months earlier, and was extremely aggressive causing huge damage to the optic nerve.

“Because of the damage to his optic nerves, Dr. Lyons says we’re walking a fine line and he will probably go blind,” said Johnson. 

“We’ve made 15 trips to Vancouver since August and spent over 100 days down there. It’s been hard financially, but my hope is he does not go blind. I would love for him to play hockey.”

Caleb, who has a one-year-old brother, Jesse, is a huge Canuck fan.

“I do slapshots and I be Kesler,” said Caleb, who has a big collection of mini sticks and a road hockey net outside his East Hill home.

“He’s all about hockey,” said Johnson. 

“Colton’s his idol. He’ll come up to people and say, ‘Hi, I’m Colton.’ He wants to score goals for the Canucks. When my mom (Debbie Sparrow) comes over, he takes shots on her and calls her Grama Luongo.”

Caleb pretty much won a hockey fantasy trip in mid January when he was treated to some Canuck love and attention during eye surgery.

Caleb’s father, David, learned through his father Darrell, a pastor in Vancouver, about Canucks’ owner Paulo Aquilini running an autistic program on behalf of the NHL team.

“Paulo and Finn the mascot came to the house (relative’s) and brought a signed Canuck jersey and a signed stick and signed Finn stuffie,” said Johnson. 

“Later on, Paulo arranged for us to have four tickets to the Canucks game with VIP parking. Caleb thought it was cool there were two Zambonis on the ice. 

“He didn’t talk for the first while. We also got a used Luongo stick signed, after the game. It was so nice to have such a positive experience.”

Caleb is not allowed to swim because the risk of infection is too high. 

He had several weeks of chemotherapy eye drop treatments to slow the scar tissue following his sixth surgery. 

He rarely sleeps through the night due to pain in his eyes.

“He can see right now,” said Johnson. 

“He’s such a resilient kid. I don’t want any of my kids to have it (glaucoma), but he’s the one best suited to handle it. He’s not going to let that stop him. It (blindness) could be next month, 10 years or it might not happen.”

The family was overjoyed after a Thursday appointment in Vancouver.

“We had some really good news today when he saw Dr. Lyons,” said Grama Luongo. 

“His visual acuity has gone from approximately 120-140/80 to approximately 40/20 today.  This is a miracle by all accounts and Dr. Lyons is hopeful at best.  So we are very happy needless to say.”