Post Falls 4-year-old faces rare syndrome with a smile as she awaits transplant
POST FALLS, Idaho — Hope is on the horizon for a little girl in Post Falls living in isolation.
With a smile like that–it’s easy to imagine Alexandria has an uncomplicated and wonderful life. But, the reality is she faces a rare disorder that’s left her without an immune system. She lives a life of relative isolation in #NorthIdaho. #KXLY pic.twitter.com/wAnvlCu0ML
— Ariana Lake (@arianaKXLY) February 22, 2019
Alexandria Cresci, 4, was born without a thymus, which is a lymphoid organ that creates mature T lymphocytes. T cells are the white cells that help the immune system fight off illnesses.
Her parents, A.J. and Kalya Cresci said their daughter’s diagnosis in 2016 was complete DiGeorge syndrome. To avoid infection, she can only leave the house when she is going to and from the hospital. Her family doesn’t allow many people to visit.
The Cresci family is hopeful a thymus transplant will be the solution to all these issues.
“Now, she’s asking why she’s sick. She knows she needs a thymus,” A.J. said. “She’ll ask when are we gonna get my thymus? When are we gonna get my thymus? Because she knows after she gets that, we can live a normal life.”
But, they’ll have to go to Duke University Hospital, in North Carolina, for the surgery. It’s the only facility in the country that offers the transplant and the program has been stalled over FDA approval.
They also face a new challenge when it comes to paying for the surgery. They were approved for the rare surgery through their insurance, but they recently had to change companies, so now they have to start the application process over.
“Our daughter is our priority and any parent wants to see their child grow up and thrive, you know? That’s our goal with Alexandria, just be able to see her live normally,” Kayla said.
Her parents said their daughter is lucky to be alive. Many children with her diagnosis die early on in life. But, Alexandria’s medical history hasn’t been without complications.
Last year, she was taken to Seattle where she spent months in an intensive care unit. She had a rare skin infection called Sweet Syndrome. They recently got back to Idaho after spending eight months at Seattle Children’s Hospital.
Now she’s back home in Post Falls with her parents and 2-year-old brother. He doesn’t have the syndrome, but still needs to stay home most days so he doesn’t bring home anything that could hurt his sister.
That’s how life will stay until Alexandria’s transplant, whenever that day comes. Even though she doesn’t know a life beyond this, she still dreams of a future beyond her front door.
“We definitely have learned not to take anything for granted at this point. We cherish every day that we have our daughter,” Kayla said.
You can follow Alexandria’s story and get updates on Facebook and Instagram @driastrong_.
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