The day that shouldn’t have to come came on October 24, 2011 to eight-year-old Jose. It was the day his mother dreaded, the day he began dialysis for stage five chronic kidney disease.
Jose was born with a congenital defect found only in male infants, posterior urethral valve. This is an abnormality causing obstruction of urinary flow. Unfortunately, doctors failed to detect it in time, and the boy’s kidney function progressively declined, leading to the need for home dialysis. This meant surgically installing an abdominal catheter, a device that uses the lining of the abdomen to filter waste products from the blood. Dialysis occurs overnight, which means Jose has to be in bed by 8:00 on school nights, and 9 on weekends. And this is what made Jose cry and ask the heartbreaking question, “When am I going to be normal?”
“I’ve always treated my children the same,” his mother said. Besides Jose, Jennifer has a 10-year-old daughter and a 7-year-old son. “I’ve never let him know he’s different. But now it’s hitting him that he is. He used to share a room with his brother, but now he has to have his own room because of the machines. He feels lonely.” The third-grader has also missed many days of school due to his illness and must leave his class every two hours to empty his catheter.
Jose travels from home in Scranton, Pennsylvania, to Geisinger Medical Center in Danville for treatment. It’s one of only four hospitals in the Commonwealth “that deals with renal kids,” Jennifer said. But since neither she nor her husband, Jose, owns a car, the 75-mile trip might as well be 1,000 miles. Added to that, both parents are unemployed. “I have to stay home to care for Jose, and my husband was laid off from his construction work. It’s been a roller coaster ride.”
When the pediatric social worker, Angela Treas, told Jennifer and Jose about Angel Wheels (she’d seen a sign for the program at Geisinger) the couple felt immense relief. “Angel Bus literally fell from the sky,” Jennifer said. “We were at the end of our rope. I was renting cars, but I’m broke. I will always be grateful.”
The first trip to Danville was from October 24-28. Besides the surgery to place Jose’s catheter, extensive time was spent in training related to dialysis. The family was driven there and back by Pat Flynn, an Angel Wheels volunteer who owns a 38-foot Bounder motor home. “He’s my little buddy,” Flynn said of Jose. “He’s a nice kid—very sharp, well-mannered. All those kids are well-mannered. I can’t wait to see him.”
Seeing him will be soon. At Jennifer’s invitation, Flynn plans to visit on Thanksgiving Day. “Her father is coming from Puerto Rico and she wants me to meet him. She said I remind her of her dad.” At that time Flynn will drop off a special gift. “I asked Jennifer what Jose wanted for Christmas and she said a PlayStation 3.” In his post-mission report of the most recent Angel Bus trip, Flynn wrote that “all went very well. Talked with Santa, and he will be delivering a PlayStation3…Good to have a direct line with Santa.”
Flynn signed up with Angel Wheels and bought his motor coach for transporting patients after his wife, Sandy, died of cancer in 2009. He and neighbor Paul Kendzor, also a volunteer driver, are active members of Friends of Angel Bus, an auxiliary group that engages in outreach and recruitment. “We’ve gone to TV stations, radio stations, hospitals, rallies.”
So far, he’s provided Jose and his family with two trips to Geisinger Medical Center, and is on board for the next scheduled appointment. The most rewarding Angel Wheels trip will be when Jose gets a new kidney, hopefully in December, doctors say. Three of Jennifer’s family members tested positively as donors. Her brother, Larry, who lives in New York, will give Jose his kidney—and until adulthood, when he will need another transplant, Jose will have his wish to be a normal boy.
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