2026 is our 17th CHOC Walk!

Nolan’s Story

 Nolan is our first born. From the day he arrived we knew he was special. He excelled at everything at such a young age- he simply amazed us at what he could do. Then one night in 2006, just before his 4th Birthday, Nolan began to have a seizure & stopped breathing. One call to 911, a ride in an ambulance, and one CT Scan later our world was turned upside-down.

And so began our journey with CHOC hospital…

            The scan revealed that Nolan had been born with a mass of cysts in his brain. He was also missing a portion of the fibers that connect his right brain to his left. The doctors were all baffled at how advanced Nolan was in his speech, social skills, & coordination. His test results in no way reflected the child that sat in front of them. In true CHOC fashion- they treated Nolan & not his condition. We worked closely with many specialists, formulated a plan, and after 2 ½ years found a medication regimen that kept the seizures to a minimum. Nolan took it all in stride and continued to succeed in all that he did.

We thought that the worst was behind us at this point and began to feel relieved that we had a handle on his conditions. Then the fevers started in the spring of 2008. They seemed to become more & more frequent and then they didn’t go away. Nolan was hospitalized as endless doctors tried to figure out what the infection was that was running through his tiny body. They tried to rule out all that they could & after 11 days his fever broke & he slowly started to recover….

This is where our next chapter with CHOC began…

After this viral infection ran rampant through Nolan’s body, he suffered through so many terrible symptoms. This led to digestive issues, countless infections, and abnormal blood work. In addition to all of this, the fevers still persisted. Nolan dealt with more in one day than most children do in their life. We saw Oncologists, Rheumatologists, Gastroenterologists, Neurologists, and Infectious Disease Specialists all at CHOC. All of whom did everything they could to try and figure out how to help Nolan. At this point we knew that his pancreas was not functioning as it should(pancreatic insufficiency)   and that there is a problem with the way his bone marrow produces white blood cells. (neutropenia)

After many tests and countless appointments, Nolan was diagnosed with Primary Immunodeficiency (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 that he was enduring.

On September 20, 2010 Nolan was given a loading dose of Immunoglobulin Therapy at CHOC- “fighter cells” from a donor medication. The dose was accepted by his body and the improvements to his health were all but instantaneous! Now each week at home he inserts needles into the subcutaneous tissue on his belly and replenishes those antibodies that he has used up. He is coming up on the 16th Anniversary this year. That is over 2100 needles, 832 infusions, and almost 2150 hours infusing. All so he can go about life. 

In addition to starting the IvIg treatments Nolan began to take pancreatic enzymes every time he ate to do the work of his pancreas. He also began lifelong meds for his seizures. Nolan was doing well and our “new normal” was becoming routine. We once again thought that the hardest times were behind us… 

For a person with severe immunodeficiency and neutropenia, the last thing you ever want to be caught in is a global pandemic. Then came 2020. Nolan was a high school senior and that year ended early with no celebrations. We quarantine completely at home. In April 2020 Nolan spiked a fever and began to feel unwell. As it turned out, he needed an emergency appendectomy. Being in a hospital during that time was terrifying. But CHOC was ahead of the curve. He did well and began to recover. 

We got past that hurdle and then in 2022, Nolan was diagnosed with Hereditary Hemochromatosis, a condition where your body does not expel or process iron properly. He began treatment (therapeutic phlebotomy) and it helped greatly. It is unfortunately another lifelong issue and treatment regimen. Once again, Nolan took it all in stride. 

Our motto from the start has been “Some sick people don’t look sick.” Nolan is the perfect example of this. The toll that being “sick” for most of his life has taken on him has been difficult both physically and mentally. Just like when he first became sick though, looking at Nolan you would never know that he faces all of these challenges. He managed to graduate high school, obtain his bachelor's degree in 2023, and in April will have his Master's Degree. All while competing as a collegiate track athlete which was a lifelong goal of his. He will be a Certified Athletic Trainer where he can help others while combining his love of sports and medicine. All of this was made possible with CHOC!

Nolan proudly served as the 2011 CHOC Walk Ambassador and is honored to be part of the Ambassador Family. Every year, the CHOC Walk allows us to come together to support not only Nolan, but all of the families served by CHOC. Join Team Torres today!