Written By: Julie, Starlight Kid Paul's Mom
This past February, I participated in runDisney’sPrincess Half Marathon Weekend and raised over $1,200 for Team Starlight. Some have asked why did I want to do it? Why did I fundraise? Or why is this so important?
Well, my answer is simple – for my son, Paul, and his invisible illness.
Paul was born healthy and without complications in September 2019, but just a few months later he began to have issues with his breathing and oxygen levels. In January 2020, I noticed that Paul was struggling to breathe and wasn’t playing or moving normally. This is when we decided he needed to go to the hospital.
They diagnosed him with RSV, admitted him for four days, and had him on oxygen. That experience was extremely traumatic for me and my family; you never want to have to see your child, of any age, sick and needing hospitalization. But we thought it was an isolated incident.
Unfortunately, these symptoms continued, and we spent hours and days in the hospital or at the doctor’s office trying to determine what was going on. After being admitted to the hospital at least six times in two years and needing oxygen on and off since he was four months old, Paul was finally diagnosed with asthma at 17 months old.
My family and I understand what it’s like to not know what’s going on with your child’s health and how scary that can be. We also know what an impact organizations like Starlight can have on children in the hospital.
During one of Paul’s hospitalizations, staff came around with a wagon full of toys and coloring books and his eyes lit up immediately when he saw a bunch of big trucks and stuffed animals just for him. The toys kept him distracted for the rest of our stay and we were so grateful for that. Paul loved getting toys delivered to his room while he was admitted.
It sounds simple, but being so young, it was hard to keep him entertained for hours on end. So, having the opportunity to play with brand-new toys really lifted his spirits.
While a lot of people look at Paul and don’t see a chronic illness or assume that “it’s just asthma,” it has impacted my son and family’s life so much. I am always worried about him catching a cold and ending up in the hospital because his oxygen levels drop too low, and he is struggling to breathe.
These times are scary and uncertain for me and my family, but we know that Starlight is doing everything they can to bring moments of joy to Paul, and kids like him, during life’s toughest times.