Miracle Monday: Mother of local infant with rare disease grateful for hospital update

Every mother treasures time with her children.

But as Jessie Burkhart holds her 14-month-old daughter in her arms, you can see how much she treasures moments like that.

“She literally just steals everyone’s heart,” Burkhart said.

Journey Burkhart is so loved. That much is clear. Her parents and three brothers have a special bond with her. Many of the doctors and nurses who have kept keep her alive love her too, according to Burkhart.

Journey has spent weeks and weeks at Sacred Heart Children’s Hospital since she was born.

“I can’t remember how many hospital stays in her first year of life,” Burkhart said.

Journey was born with STAR syndrome. It’s so rare, only ten people have been diagnosed with the genetic disease. It impacts a wide range of body parts, which are reflected in the STAR acronym.

Inheritance of STAR syndrome is X-linked dominant, according to the National Center for Advancing Translational Sciences. It’s thought to be deadly in male embryos; only females with STAR syndrome have been reported.

With this disease comes life-threatening complications and a shorter life expectancy.

“We almost lost her several times,” Burkhart said. “I was asking my mom to help me buy three plots together just so we could all be together.”

Journey’s future is uncertain. But the Burkhart’s have found strength in their faith to take it one day at a time. They spend a lot of time in the pediatric unit at Sacred Heart Children’s Hospital, in Spokane.

That unit recently went through a major refresh, which the Burkhart family was happy to see. The updates include brighter colors, new furniture, and many other changes to make it feel less like a hospital.

“Being in a dark room dealing with dark stuff is like super depressing, so it’s really nice that they’ve made it more cheerful, more bright and happy,” Burkhart said.

Inland Northwest Ace Hardware stores pledged $1 million dollars toward the renovation. Much of that came from individual customers who opted to round up at the register for Children’s Miracle Network.

Dawn Gregg owns two Ace Hardware stores in Spokane. She’s been a longtime supporter of Children’s Miracle Network and Sacred Heart Children’s Hospital. Gregg said each person can do their own small part to accomplish a big difference in the community.

“Every single penny, whether you’re donating three cents or 80 cents, it adds up and it stays right here,” Gregg said.

That money helps the thousands of families, like the Burkharts, who receive care at Sacred Heart Children’s Hospital.

While the Burkharts face uncertainty and pain, they’ve learned to embrace and love their journey.

“My biggest goals are for her to just be happy and healthy as she can,” Burkhart said.

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