As they wait for son's kidney transplant, Baca family takes Make-A-Wish journey

Saturday, March 14, 2009
As they wait for son's kidney transplant, Baca family takes Make-A-Wish journey

Melissa Hubbell News-Bulletin Staff Writer; mhubbell@news-bulletin.com

Los Lunas For one week, Lisa Baca said, she and her family lived in a literal fairy tale world; a dream that allowed them to forget the crippling reality that their eldest son is waiting for a kidney transplant that may never come.

To look at 17-year-old Joseph Santillanes, one would think he was a typical junior at Los Lunas High School. Walking into the family's house in Los Lunas, most people would find it difficult to tell which child was the "sick" one.

But Santillanes is sick. He has chronic kidney disease. Chronic kidney disease is when one suffers from gradual and usually permanent loss of kidney function over time.

At 6 months old, Santillanes was diagnosed with Wilm's Tumor, a tumor of the kidneys that typically occurs in children, rarely in adults. The infected kidney was removed and after chemotherapy and radiation, at the age of 3, Santillanes was in remission.

In May 2008, during Santillanes' sophomore year at LLHS, he found out that he had a form of lupus in his kidney.

Sometimes family members are able to donate a kidney to parents, children or siblings. However, Santillanes' father, Toby Baca, is diabetic and his mother, Lisa Baca, is a different blood type. Santillanes' siblings, Faith and Fabian, both 11, are too young to even volunteer for the surgery. This leaves Santillanes' only option a transplant donor waiting list.

Santillanes was offered the chance of a lifetime when he was told he qualified for a wish from Make-A-Wish Foundation. His first choice, without thinking, was going to Disney World. His only stipulation was that his family be able to come too. If not, Santillanes asked for a swimming pool in the backyard of the house. He wanted his wish to be something the whole family could enjoy, his mother said.

From Feb. 8 to 15, the Bacas took their first family vacation courtesy of the Make-A-Wish Foundation.

The family stayed at the Give Kids The World Village, a 70-acre non-profit resort complete with more than 100 villa accommodations, entertainment attractions, whimsical venues and fun specifically designed for children with special needs, a place that offers children with life-threatening illnesses vacations. The Bacas met 18 other families that were also staying at the village.

"We were treated like royalty there," Lisa said.

The family described the village as a fairy tale land with storybook cottages and free ice cream from 9 a.m. to 9 p.m. Lisa said it felt so much like home that children ran through the village by themselves. playing and swimming without a care for the outside world.

"You would never know that these kids were sick," Lisa said. "You didn't feel the pain and sadness there. It was so positive."

During their time in Florida, the Baca family went to Disney World, Disney's Animal Kingdom, Universal Studios, Wet 'n' Wild, Epcot Theme Park and Busch Gardens.

Unlike the majority of people who visit these places on vacation, the Bacas were given a special pass so that they didn't have to wait in line for any rides or to meet any characters. The family consensus was that the roller coasters were their favorite part of the amusement parks. Santillanes and his dad especially said they couldn't get enough of them.

"We really needed it," Lisa said of the trip. "We were surprised he made it through the week (without getting sick or needing medical attention). That week prepared us for what was to come."

Lisa said what is to come is a lot of waiting to see what happens with the donor list. Santillanes' doctor said he could get a kidney as soon as six to nine months, but nothing is guaranteed. In the meantime, because Santillanes' kidney isn't functioning correctly, he goes to Albuquerque to receive dialysis for four hours, three times a week.

"He's the one facing it, and he has the most faith and strength than all of us combined. He felt badly for the sick kids at the village. We had to remind him that he's sick too," Toby said.

Both parents said that they are consistently impressed with the positive attitude, outlook on life and hope that their son possesses.

"He's our rock, our strength. He gets us through everything," Lisa said.

Doctors recommended that Santillanes finish out the semester at home but he said he's determined to graduate with his class next year, which means not getting behind now. However, he has had to give up some of the things he loves most, which means LLHS track and a local basketball league he played for. "He can't play sports or do things he used to like to do. He's pretty much confined," Toby said.

As the family sits together in their living room, there's a feeling of gratitude but also worry. It's their first real day back in their house since the trip. The kids attended school during the day, Toby went to work and Lisa prepared dinner for the first time in weeks. She said it's good to get back into life and a routine again, but that it was incredibly sad leaving Florida.

"They made us forget. We forgot he was sick. I had forgotten what it was like to be happy until I was there. They helped us become a family again without pain and crying and worrying," Lisa said.

Santillanes hopes to be well enough to be able to play basketball for Los Lunas High School next year and has already decided he'd like to attend New Mexico State University for college. He said that if he's learned anything within the last year it's that it's so important to be yourself.

"God has a plan for everyone," he said.

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