Addison Kapustiak is not your typical 9-year-old, while others are running around, playing and just being kids, she has been in and out of hospitals since she can remember. Before she was two years old she already had undergone three difficult brain surgeries.
She suffers from a very rare genetic disease called Tumor Necrosis Factor Receptor Associated Periodic Syndrome (TRAPS). This disease affects each patient in a different way, in some people for example, it can cause frequent fevers, aches in the muscles that move the arms and legs, as well as chest pain and swollen red eyes and rashes.
To help with her symptoms she must receive steroids and anti-inflammatory medications every other week, now what makes her really special is that she doesn’t let all of that bring her down, but finds ways of being not only helpful in spite of this condition, but a blessing as well.
At Johns Hopkins All Children’s Hospital in Florida, where she and many other kids get their treatment, they have this custom of, once each of them has finalized a treatment successfully. She knows the feeling of getting to go home not only with their health recovered, but also the process of choosing one of the toys from the site’s toy closet to take home.
After one of her treatments, she noticed that the toy closet was rapidly running out of toys for the other patients, and what was only left was a few toys from Happy Meals and other small baby toys that she didn’t really fancy at all. She felt that there was something that she could do, and what she ended up doing is asking for toys for her ninth birthday, but not toys which would be given to her as presents, but in the form of donations to the toy closet. “It made me feel awesome to make kids feel happy,”
She also started a nonprofit organization called Sending Smiles, which collects toys as donations for the toy closet at Johns Hopkins All Children’s Hospital among others. This past Christmas she arrived with a very big donation for the closet of four carloads of toys. She was also recognized as the 268th Lightning Community Hero of Tomorrow by the Lightning Community Heroes Program and The Lightning Foundation, both part of the Tampa Bay Lighting, their local hockey team. She was also given a $50,000 donation by them, $25,000 to go to her college education and $25,000 for her own nonprofit organization.
