The burden of ‘a normal life’

Without seeing him, Zachary Craig sounds like a normal boy.

He cuddles with his favorite pet, a Shih Tzu named Fritz. He sways with ease through the monkey bars. Like any boy, he has pictures of his favorite idol on his bedroom wall: heroic archaeologist Indiana Jones.

But 7-year-old Zachary isn’t an ordinary boy.

His wide smile can’t hide his slurred speech. He was born with a severe cleft palate and lip.

He gets tired from playing basketball in a few minutes. At age 4, doctors diagnosed him with sacral agenesis, a deformity of the lower spine with misshapen or missing vertebrae. The condition affects fewer than three newborns per 100,000 births, according to the National Library of Medicine’s website. Zachary is missing all five of his lower vertebrae.

He requires a catheter to flush his bowels. He needs braces to walk, but doctors warned his parents, Scott and Courtney Craig, their son may be wheelchair-bound before adulthood.

“As a parent, it’s hard to watch him go through this,” said Scott Craig. He cupped his chin with his hand as a tear dangled on his eyelash in the family’s Glendale apartment Saturday. “All we wanted was a child that could sit and play and now we have to worry about keeping him alive, keeping him healthy and keep him walking.”

Doing that has been a financial burden for Scott Craig, his wife Courtney Craig, and their five other children — all daughters. But the goal to give Zachary a normal life hasn’t gone unnoticed.

One of the couple’s daughters, 19-year-old Whitney, created a “YouCaring” donation page seeking $8,000 for her brother’s medical costs. So far, the effort has raised $400.

“I don’t want my parents just barely making it,” Whitney Craig said.

“I was really grateful to her,” Scott Craig said about his daughter creating the fundraiser. “It’s hard to ask for help, but I had to admit, we can’t do it all ourselves.”

For years, Scott and Courtney drove from Las Vegas to Los Angeles — sometimes monthly — for Zachary’s treatments at Shriner’s Hospitals for Children. Last year, the couple uprooted their family, leaving their native Las Vegas.

Scott and Courtney Craig left longtime teaching positions at Del Sol High School to be closer to Zachary’s treatments. The couple was jobless upon moving to Glendale. Scott Craig depleted his retirement fund paying for their Glendale apartment, bills and their son’s medical needs.

Now, Scott Craig teaches U.S. and world history at Sylmar High School, and Courtney Craig teaches piano lessons, staying at home to give Zachary around-the-clock care.

While the Craigs were not charged for procedures performed at Shriners Hospital, out-of-pocket expenses caring for their only son — including catheters and travel costs — have surpassed $20,000 over the years. He still needs more surgery to repair his teeth and gums, which will not be covered by Shriners.

“We want to give him a normal life, but not give him a childhood filled with surgeries,” Courtney Craig said.

Both Scott and Courtney Craig agree the support from family and friends soothes the situation. Six-year-old Faith pushes Zachary in his wheelchair after every surgery. The staff at Balboa Elementary allow Courtney Craig to check on Zachary multiple times a day.

Then, Zachary smiled as he showed off his plastic, blue braces decorated with cars while sitting on the living room floor. He made sure not to drop the blueberries in his hand as he chased Faith to his room.

“But his attitude about this — it makes it easier,” Courtney said, smiling.

To donate to Zachary Craig’s fundraiser, visit https://www.youcaring.com and search for “Zachary Craig.”