Six-year-old Courtney Quintana faces a rare disease, which has
led to numerous surgeries, with a brave face, charm and amazing
strength
Gilroy – Two months ago Courtney Quintana was running around with friends, chasing boys at Antonio Del Buono Elementary School.
But in October a viral infection that turned into a rare disease called thrombotic thrombocytopenic purpura, attacked her then 63-pound body. Surgeons had to remove the majority of her small intestine. Now the 6-year-old’s days are filled with blood tests, intravenous feedings and other painful procedures.
Yet, friends and family have remarked, that through it all Courtney has maintained a brave face.
That charm and strength was on display Thursday when a visiting nurse changed the dressing on her feeding tube. As the sticky tape pulled at her skin Courtney struggled to keep her pain at bay but finally she just let it out.
The shrieking and whimpering filled the bedroom, as Courtney squirmed under her purple, butterfly-covered comforter. Dionne Powell came to her daughter’s side, smoothing her brunette bob, attempting to calm her down.
When the nurse said she was done, Courtney said quietly, politely “No more, please. No more, please.” The nurse dug into the Snow White and Cinderella-embellished tin containing bandages and other unpleasant medical supplies, searching for some tape that wouldn’t hurt so much.
As Courtney lay on her back, taking deep breaths as instructed, the nurse said “All the bad stuff is over.”
But “all the bad stuff,” which has been washing over Courtney’s family since January, isn’t over, just yet.
On Wednesday, the first-grader will return for another surgery to connect what’s left of her small intestine to her large intestine. About six weeks ago doctors had to remove all but 11 centimeters of Courtney’s small intestine after a blood clot formed on the organ.
Since then all her liquid meals stream through a tube and the waste is deposited in a ostomy bag. She’s lost weight and now tips the scale at 55. Still, the feeding tube will remain because her body won’t absorb any of the nutrients of the food since everything will run right through her, said Powell. The ostomy bag will be removed, making it difficult for her to return to school, since she would have to be right by a bathroom.
Courtney will continue to be fed intravenously for about a year-and-a-half, depending on how she fares, or until they get the go-ahead for a transplant. The procedure she will need originated at a hospital in Pittsburgh so Powell plans to fly there for the surgery.
In the midst of all this, Powell, a single mother of two, is still coping with the recent death of her mother and facing a mountain of medical bills that already total close to $500,000. In January, Powell’s 57-year-old mother contracted pneumonia, which led to dehydration and eventually kidney and liver failure.
She died in March. Seven months later they were in the hospital with Courtney.
Powell, who works as an escrow officer at First American Title in Campbell used up all her vacation and sick days caring for her mother and then Courtney and is currently on unpaid leave through the U.S. Department of Labor’s Family Leave Act.
She has to return to work on Jan. 9, but fortunately she has a strong support system in Gilroy. Courtney’s grandfather, who lives with them, and her aunt will help out. Also, Powell’s longtime friend Heidi Mello has helped take care of Courtney’s older brother during all the turmoil.
Courtney’s actually looking forward to Wednesday’s surgery because when it’s over she’ll get to grub on lasagna or as she calls it “tasangna.”
But in the meantime she’s lamenting a Christmas that won’t be filled with mashed potatoes smothered in gravy and apple pie.
Before the smells of roasting turkey and other holiday treats even have a chance to begin wafting through her home, the 6-year-old will be upstairs, sealed in her bedroom, trying not to think about the meal she won’t get to enjoy.
Powell feels awful, eating dinner while her daughter looks on longingly.
Her maternal instinct to indule her daughter took precedent the other day when she let her dip her finger in some gravy.
“The gravy tasted good,” Courtney said with a smile.
And the other night, she couldn’t resist the urge to nosh on a snack her cousin was enjoying, a move that landed her in the hospital.
“The temptation was there, so she ate some salami and it clogged her bag,” Powell said referring to the ostomy bag.
Since Courtney has to miss so much school, a friend of the family and retired teacher has stepped up and volunteered to serve as the little girl’s in-home tutor. Carol Powell, no relation, will visit Courtney two to three times a week to teach and maintain close contact with her ADB teacher.
Carol Powell first met the family when she taught Courtney’s older brother Christopher Quintana at Luigi Aprea Elementary School. Courtney’s grandma would bring her along when she dropped Christopher off at school.
“Since Courtney was like 2 years old I’ve just had this special affinity for her,” said Carol Powell. “She’s just this little spiritual angel … She’s always been able to say these neat things that you would expect from an older child. She’s one of those little girls that everyone loves to be around.”
Even if Courtney can’t enjoy all the yummy treats associated with Christmas, she’s looking forward to finding a pink Barbie Jeep under the tree Sunday morning, courtesy of Santa Claus.
Contributions for her medical bills can be made to the Courtney Quintana Trust Fund, Wells Fargo Bank, account number 6375067235.
