Jerzen's Story

Tiny Light Jerzen loves playing outside in the sun or in the snow, watching Toopy & Binoo and the Bubble Guppies on TV, building with his blocks, playing with all of his Fisher-Price Little People, and doing puzzles.

When his mother, Julia, was pregnant with Jerzen, he was diagnosed with heterotaxy syndrome (a disease that effects the organs and usually the heart) and multiple congenital heart defects at a 22-week ultrasound. He also has asplenia, a medical term that means he has no spleen. On September 6, his parents met him for the first time but never got to hold him as he was rushed to the PICU right away. He had his first open-heart surgery when he was 16 hours old, and spent his first month of life in intensive care; this was just the start to his family’s journey. Jerzen had more check-ups than could even be counted and, at the age six months, Jerzen needed to have his second open-heart surgery. It was hard for all concerned but recovery time was much quicker this time.

Today two-year-old Jerzen has cardiology appointments every six months and regular check-ups frequently, but aside from that lives a very regular life. Jerzen loves Elmo and Mickey Mouse, playing outside, and his blankie. In the near future Jerzen will need to undergo another heart surgery.

His parents’ hopes and dreams for Jerzen are that, despite his condition, he will continue growing and have an everyday life with no more complications the way he deserves. It inspires his mom that at the age of two, Jerzen has been through so much, but he has pulled through and is so full of energy and is such a happy boy!

Written by Lori McLellan

Images Captured by Robin Smith Photography