Few things in a hospital setting are more terrifying than silence…it almost always means that something has gone wrong. Charisse first experienced this when she was pregnant with her son, Richie. During a routine ultrasound, the technician was happily chatting with both her and her husband, Richard, when suddenly she stopped talking. This silence later revealed the discovery of Kyphosis, which is a curvature of the spine that can lead to many medical complications for a fetus. At that moment, Charisse and Richard began learning all they could about Kyphosis.
Charisse and Richard were again met with hospital silence when Richie was born. While they eagerly awaited the sound of his cries during a scheduled C-section, all they heard was silence. When he was born, Richie could not breath and had to be immediately intubated. Next, after just 10-weeks of being a mom, Charisse again found herself surrounded by silence. Due to his condition, Richie had to undergo tracheostomy surgery, which would leave him unable to speak for two years as he relied on a ventilator to breath. While Charisse and her husband awaited a time where they would hear Richie’s voice, they found strength in knowledge, becoming his voice and greatest champions.
Charisse and Richard found becoming experts on Richie’s rare diagnosis, an RYR1 mutation and congenital fiber type disproportion myopathy, have allowed them a seat at the table with his 11 specialists where there is collaboration, respect, and discussion that allows Charisse and Richard to make the most important, best informed decisions for their son.
Charisse and Richard’s collaboration with Richie’s care team has had beautiful outcomes, despite the challenges. Today, Richie no longer needs a trach. He is a bright, beautiful Kindergartner reaching new and exciting milestones, and developing his own unique voice…just as Mom and Dad taught him.
By educating themselves about their son’s condition, and by working with his healthcare team to make informed medical decisions for Richie, Charisse’s story speaks to the PVI principles of Empowerment, Respect and Information.
Also visit Charisse’s website, Madvocator, to learn more about making a difference through advocacy.
Watch Charisse’s story below: