Siblings with mitochondrial disorders give back to nonprofit

For Burbank siblings Hannah and Luke Chulack, Wednesday changed everything. And by “Wednesday,” they mean their service dog, the canine brought in to make a life of isolation a bit more bearable.

Luke, 12, and Hannah, 10, have mitochondrial disorders that knock down their energy levels, prohibiting them from attending school or taking part in any physical play. Wednesday is the companion they can’t normally have, the friend who fetches their socks, who is there when things get rough.

Grateful for their furry friend, the two set out to help the nonprofit — Canine Companions for Independence — that provided her. Never could they have known that their grand gesture of gratitude would end up suffering a cruel setback.

First, some history.

Luke was diagnosed with the disorder as a first-grader. By fourth grade, the constant pain, a weak immune system and weekly doctor’s appointments made home schooling necessary.

“That’s when I realized that Luke needed that someone — that something,” said his mom, Nanci Chulack.

Two years ago, Chulack applied for a service dog through the canine nonprofit. Six months later, the family got Wednesday, a golden retriever and Labrador mix.

Soon after, Hannah was diagnosed with the same mitochondrial disease. At age 9, she started coming down with the tell-tale symptoms: fatigue and the inability to play or learn at school.

Hannah spent four days in the hospital last year, with Wednesday lying by her side, as doctors tried to crack the puzzle of her low white blood cell count.

“I was really scared, but Wednesday comforted me,” Hannah said.

These days, Burbank Unified teachers instruct them at home, and Wednesday is there every step of the way to fetch the kids’ socks, open doors, shake hands and let Hannah and Luke bury their faces in her white coat.

With so much love from Wednesday, Hannah and Luke sought to help Canine Companions, which runs on private donors and volunteers to raise and train puppies.

The entire process averages $55,000 for each dog, borne completely by the nonprofit.

So Hannah and Luke spent their entire savings — about $500 each — on two yellow gumball machines and the candy to fill it. They taped a picture of Luke and Wednesday to the machine, along with a note letting customers know where the donations would go.

Luke placed his at a Burbank school and raised $10. But after only a few months, the machine was stolen. The thieves also ripped Luke’s picture off and left it on the floor.

“They couldn’t believe someone would do that,” Nancy Chulack said, but, she added, “it didn’t stop them from wanting to continue forward. That’s their approach in life. They have a goal.”

Now the siblings are looking for a safer location, such as a local business, to place Hannah’s machine, still optimistic about what they could do for the service-dog group.

“That’s how I got the idea,” Luke said. “To give back and have a vending machine.”

Their ability for overcoming hurdles in life is what their teacher, Gail Greene, credits them with most.

“These kids are so remarkable,” she said. “They look out for each other. They both understand what it is they’re going through.”

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If you know of a safe place for a gumball machine, email Nanci Chulack at nanchulack@gmail.com.