Nolan's Story, the 2011 CHOC Walk Ambassadorby Adrienne Krock, staff writer
You might say Nolan Torres is small-framed. Even with an age difference of almost three years, Nolan and younger brother Mason are about the same height. Nolan's physical stature is a result of a special medical condition that makes it very difficult for his body to fight off infections.
Being shorter is no impediment for Nolan, though—his smile would give Prince Charming a run for his money. In fact, smiles come naturally, not just for Nolan, but for his entire family—and may be an outward expression of the big and generous hearts that provide the anchor for this tight-knit family.
Both mom and dad are very involved with the kids. Mom Kris is the PTA president at the boys' school, and regularly serves as a Little League team mom for both Nolan and Mason, while dad George is a volunteer manager for one team and coach for another, serves as a safety officer for the Little League Board of Directors, and even participates in the school's WATCH D.O.G.S. program (a national father-involvement initiative that provides a father-figure presence in schools with an eye towards decreasing school violence).
In addition to all the activities the Torres family is involved in, they also regularly tackle the traffic bottlenecks through the Santa Ana Canyon on Highway 91 to take Nolan to Children's Hospital of Orange County (CHOC). As with every other goal they work toward, the Torres family meets their son's health challenges with gusto and unbelievable determination.
Determination is no stranger for mom Kris, who at 14 learned that her mother had terminal cancer. Kris refused to give up. She stayed by her mother's side—and her mother survived not only the cancer but even overcame a series of other health crises, to live for a full decade after the initial diagnosis. During that decade, Kris thrived in her own life, finishing high school, entering college, and marrying George, her high school sweeheart. Her mother was able to enjoy becoming a grandmother to both Nolan and Mason, and it was with Nolan that grandmother shared a very special bond.
On her deathbed, the grandmother comforted Kris, "He's sick, but he's going to be OK." Kris and her brother thought it strange that their mother would make such a odd statement when Nolan was perfectly fine.
He wasn't. Less than 24 hours after Kris's mother passed away, just past midnight on a Friday morning, Nolan experienced the seizure that would change his life and that of the Torres family forever.
That Monday, Nolan's pediatrician saw his first MRI, and immediately called Kris. "Pack your bags and get a babysitter to care for Mason for up to several days." Kris realized something must be terribly wrong; the pediatrician had already arranged a Ronald McDonald House room for them at CHOC and Nolan had an appointment with a neurosurgeon at 1:00 that afternoon. What was wrong with Nolan? Based on the MRI, the doctor initially thought it might be cancer. It had just been a few days ago that grandmother had passed away, but now, Kris had to relay the pediatrician's suspisions to George.
Kris and George kept things together as they started the first of their long drives to Children's Hospital of Orange County, and Kris realized she needed to keep Nolan's spirits up and keep the energy upbeat. "Nolan asked me where we were going," explains Kris. "I didn't know what to say, so I told him, 'You know your doctor? She knows another doctor she wants you to visit. He works at a place that's like a fancy hotel, that's only for kids. We have to take suitcases, and they even have room service!' George looked at me like, 'What are you doing?' But then he got it, and said, "Yeah! They have room service!"
Nolan's favorite Disney character is Tinker Bell because she was his grandmother's favorite. Nolan cherishes his late grandmother's Tinkerbell blanket. He also collects snow globes; this Tinker Bell snow globe, his favorite, also reminds him of his grandmother. Photo by Adrienne Krock.
After a battery of tests, it was determined, to some relief, that Nolan didn't have cancer. Unfortunately, doctors were still puzzled as to Nolan's condition; he still had no single formal diagnosis. Worse, doctors discovered an abnormality in Nolan's brain. While most people have a series of fibers that connect the hemispheres of their brain, Nolan's brain was missing most of these fibers, and in their place was a mass of cysts. How was it possible, the doctors wondered, that this young boy's speech, social skills, and coordination could be so advanced, when his brain was in the condition that it was? They surmised that his brain must be compensating for the missing fibers.
During his first in-patient stay at CHOC when he was 4 years old, his doctor brought a group of medical students into Nolan's room. The doctor asked Nolan a series of questions about his favorite team, Major League Baseball's Los Angeles Angels of Anaheim. Nolan was like any true baseball fan; he knew the names of the coaches, the players, and stats about the team. The doctor even tried to stump him, but failed. When the doctor finished quizzing Nolan about the Angels, he shared Nolan's MRI with the medical students, showing the cysts in his brain and the lack of connective fibers between the hemispheres of his brain. Then the doctor told the students something Kris remembers to this day. He said, "This is why we treat patients and not pieces of paper."
Still, the seizures continued unabated. It took two and a half years, but the doctors at CHOC finally established the right regiment of medications to keep Nolan's seizures to a minimum.
But then, the fevers started. At CHOC, Nolan saw oncologists, rheumatologists, gastroenterologists, neurologists, and infectious disease specialists. Together these masterful detectives discovered that Nolan's pancreas does not function, and finally, they were able to diagnose Nolan with Primary Immunodeficiency (PI). The Team Torres website describes PI:
In a nutshell, he is missing vital antibodies in his immune system that fight off infection from viruses and bacteria. Without these antibodies, Nolan's body is unable to produce "fighter cells" like a healthy person. His body was attacking itself when it encountered infection, causing a lot of the symptoms he was enduring.
A year ago today, on September 20, 2010, the doctors at CHOC gave Nolan a big "loading dose" of immunoglobulin therapy to kick off his new treatment. This medication supplies the "fighter cells" that Nolan's body cannot produce. And now that he is on a regular regimen, Kris and George administer medication through three subcutaneous needles to Nolan once a week at home to replenish the antibodies. Combined with an oral pancreatic enzyme, Nolan's therapy has changed his life. Nolan is still sick, but he is growing and his physical results amaze his family.
Kris struggles to find the right words to express how she feels about CHOC. She tries to adequately describe the CHOC staff: "Everyone, from the receptionists to the nurses and the doctors are just so wonderful with the patients and their families." She added, "You just can't grasp the level of care at CHOC until you've experienced it. You're not just a patient, you're part of the CHOC family."
When one child needs more time and attention, sometimes siblings miss out on some attention. But Kris relates that one thing she appreciates about CHOC is that family is a priority: CHOC treats the whole family. Younger brother Mason comes along for appointments and often gets in between Nolan and his doctors to watch the action. He helps at home by occupying their family dog while his parents help Nolan with his treatments or by bringing Nolan things he needs. Mason and Nolan share an especially strong and loving bond as brothers. Despite being three years younger, Mason is fiercely protective of Nolan.
With all this attention focused on Nolan, how are things with Mason? Both George and Kris realize Mason needs special time, too. So when Kris takes Nolan to CHOC for his in-patient visits, George and Mason go do something together, or go on a special trip to visit Grandma and Grandpa Torres.
Nolan and younger brother Mason love their puppy, a "Coach Gift" to the Torres family at the end of the spring Little League season. His name is CHOCO, just like the CHOC teddy bear mascot. Photo by Kris Torres
With everything going on in the Torres family schedule—work, school, PTA, WATCH D.O.G.S., two Little League teams plus the Board of Directors—why do they spend so much time and effort raising money for CHOC? Even before Nolan served as CHOC Walk Ambassador, the family worked hard to raise funds for the event.
"They were there for us in a very very very very scary time," Kris said. "CHOC took the scariest situation that a parent could possibly imagine, and made it manageable." When Kris and George took Nolan to CHOC for treatment, the doctors turned it into something they knew they could deal with. Kris wants that for every child.
Kris believes people just don't realize how many families are impacted by CHOC and receive treatment there. Looking around our communities, we cannot appreciate just how many lives CHOC touches. Nolan understands this, too. When CHOC interviewed the Torres family for the Ambassador position, Nolan told the interview committee that he wants others to understand: "Some sick kids don't look sick." Indeed, despite all the time the Torres family spends at CHOC, most of the people in their lives know nothing of Nolan's medical struggles. This has become Nolan's slogan.
Kris adds that CHOC never turns a child away; it provides care for children regardless of economics and insurance.
Team Torres during the 2010 CHOC Walk. Nolan's favorite Disney movies are Toy Story and Cars. (He has a hard time chosing between the two.) His favorite ride at Disneyland? "Space Mountain". That one was easy. Photo by Kris Torres.
For the third year in a row, they have put together Team Torres for the CHOC Walk at the Disneyland Resort. Kris not only leads the team, but holds fundraisers with local businesses around town to support the event. When asked if she'd always been this feisty, a smile broke across her face. She laughed, and said "Yes."
In addition to the regular CHOC Walk fundraisers Kris usually coordinates, with Nolan as the 2011 CHOC Walk Ambassador, the Torres family is busy attending CHOC Walk functions and finding opportunities to coordinate even more fundraisers on their own. Kris feels that the best thing about Nolan serving as ambassador is seeing something positive come from Nolan's condition. The Torres family receives love and support not just from their friends and family but from total strangers in the community who step forward to help – even from Major League Baseball players. Like the L.A. Angels and the New York Yankees. Kris appreciates focusing on the positive support her family receives, without pity. She cannot focus on pity. "I couldn't get through it if I did."
If you're reading this and wondering how you could help, it's simple: Sign Up for the CHOC Walk.
Did you know that MousePlanet has had a CHOC Walk team for the past three years?
Team MousePlanet is back for our fourth year at the CHOC Walk in the Park, benefiting Children's Hospital Orange County. In 2010, 74 members of Team MousePlanet jointly raised $11,626.40—we'd love to beat that record for 2011. The 2011 race is Sunday, October 16, 2011 at the Disneyland Resort. There is no fee to sign up; you just need to raise $50 by the event day. Here's how you can participate:
- Walk with Team MousePlanet – register to walk with us at the October 16 event, and earn prizes as you meet your fundraising goals. Team MousePlanet Walkers who raise at least $50 (the minimum entry fee for the walk) by October 14 receive a VERY SPECIAL Team MousePlanet ear hat as a thank you for their participation, and are eligible for additional prizes from Walk sponsors.
- Raise money with Team MousePlanet – register as a "Sleeping Bear," (someone who is raising money, but cannot attend the Walk in person), and earn prizes as you meet your fundraising goals.
- Sponsor a specific Team MousePlanet walker – sponsor a Team MousePlanet walker, and help them earn prizes.
For more information, to register or to donate, visit our CHOC Walk website.
There is NO FEE to sign up this year, you just have to raise $50 by the day of the event. Come join us!
You can join the Team MousePlanet Discussion Thread on our MousePad Message Boards.
Upcoming Orange County area Fundraisers!
Friday, September 23, 2011 – Chik-Fil-A of Orange for CHOC with Team Torres
5:00 pm to 9:00 pm
(Sales will count all day, even catering trays for your office! Just mention Team Torres/CHOC when you order!)
2575 N Tustin St, Orange, CA 92865
A raffle and silent auction will include Major League Baseball items, including signed balls from New York Yankees relief pitcher Mariano Rivera (who just celebrated his 600th save earlier this month) and second baseman Robinson Cano, Disney items, a massage/facial package, toys, jewelry, and more. The silent auction ends at 8:00, and the raffle drawing takes place at 8:30.
More information at the event's Facebook page.
Sunday, October 2, 2011 – CHOC Day at Charming Shoppe with Nolan Torres and Team Torres
11:00 am – 4:00 pm
140 South Glassell Street
Shop CharmingShoppe on Sunday, October 2, and support Children's Hospital Orange County. 10% of all regular-priced purchases made this day will be donated to CHOC.
If you can't attend in person, you can also shop online at www.charmingshoppe.com and have your sales count toward the CHOC fundraising totals. Just enter promotion code CHOC in the box when you check out on October 2, and 10% of your regular-price purchase will be donated.
Stop by in the afternoon for scrumptious baked goods as well! More information here.
Author's Note: When CHOC selected Nolan Torres as its CHOC Walk Ambassador, I immediately knew I wanted to write an article about him. Nolan and Mason live in our neighborhood and we socialize with them through our local elementary school and community. And although I had known Kris for several years now, after visiting with them this past week and getting to know their story, I can't think of a better family to represent CHOC. Should you see them at a fundraiser or at the CHOC Walk, be sure you stop to say hello and meet Nolan. He would love to meet you.