Extra Life Supports Kids Like Joe Joe

October is Down Syndrome Awareness Month and at Children’s Miracle Network Hospitals, we love being able to support families with their medical needs related to Down syndrome.

Joe Joe is 13 years old. He loves to swim and surf. He’s been competing in track and field. His family keeps him active in school and the community by involving him in extracurricular activities and services at their local church. He never gets mad or upset, and he tries to lift up everyone around him. Joe Joe also lives with Down syndrome, a condition his doctors discovered shortly after his birth along with a rare form of cancer affecting his bone marrow.

Joe Joe’s mom, Kris, loves her son. “He wears us out!” she laughs, “He is an 8-to-8 kid; he is on the go all day.” Joe Joe is a miracle kid in every sense of the word. He was born with a rare form of cancer called transient myeloproliferative disorder. This condition can affect fetal blood-forming organs like the liver and bone marrow. This can have wide-ranging effects from permanent organ damage to death. With the help of his skilled team of doctors, Joe Joe was able to recover from the condition and become the happy, healthy kid he is today.

While Joe Joe has Down syndrome, Kris believes firmly in the advice she received from the pediatrician who helped her right after Joe Joe was born. “If you want a disabled, sick child, treat him like a disabled, sick child. You want a healthy, active child in society? Then that’s how you treat him.” Those few sentences have shaped how Kris and her family have raised Joe Joe, letting him live in the world without sheltering him from the challenges he has to overcome.

Down syndrome arises in individuals due to a quirk that can occur in chromosome 21, often caused by an extra copy of the chromosome being present in their DNA. This extra genetic material can result in a divergence in brain development, facial structure, as well as certain developmental delays. Though they might face certain difficulties, individuals who have Down syndrome live lives very similar to those who don’t have it. Those with Down syndrome have personalities, interests, and talents, with the ability to learn the same skills as people born without Down syndrome.

You can watch Kris and Joe Joe on the reality series produced by Children’s Miracle Network Hospitals called Real Moms. The twelve episode series follows the lives of several moms out in the world as they raise kids who deal with life-altering medical complications. The series premiered earlier this year and you can watch the entire run on YouTube for free.

Don’t forget to sign up for Extra Life to help sick and injured kids in hospitals around the US and Canada by playing games!