Unfortunately, there are a number of negative or false societal narratives around the concept of “rare disease” or “disability,” particularly when it comes to what these individuals can achieve. Having a rare disease or disability does not mean that someone is lesser or incapable; while they may do things differently, there is beauty in difference. Kalli Gregory knows this to be true. Her brother Trent (26) has cerebral palsy (CP), a neurological movement disorder. 

As Gregory shares in the Sandusky Register, one of her goals is raising awareness about cerebral palsy, but also about what individuals with CP can achieve. She has seen her brother graduate from high school with honors, travel across the country, play baseball, and build amazing connections on the way. To Gregory, it’s harmful for people to think that someone isn’t capable just because they have physical or even neurological differences. 

Throughout her upbringing, Gregory advocated wherever she could: passing out flyers at sporting events, presenting information to her classmates, and donating the proceeds of her artistic endeavor—Kalli’s Creative Corner—to the Cerebral Palsy Alliance Research Foundation. If you’d like to contribute to the cause, you may also donate here. She is also working to expand her nonprofit organization (Trent’s Triumph), studying to become a pediatric neurologist, and reminding others not to judge someone based on first glance. 

What is Cerebral Palsy (CP)? 

Cerebral palsy is caused by brain injury during development in the womb, at birth, or within the first two years of life. Genetic mutations, maternal infections, fetal stroke, and traumatic head injury may all be causative. As a result, people with cerebral palsy often lack muscle control and movement coordination. For some, functional impairment is mild; for others, it can be incredibly severe. Symptoms and characteristics may include:

• Muscle spasticity (stiff muscles, exaggerated reflexes) or rigidity (stiff muscles, normal reflexes)
• Slow, writhing movements
• Muscle tone that is too loose or too stiff 
• Motor skill delays
• Vision or hearing loss 
• Abnormal touch or pain perceptions
• Urinary incontinence
• Intellectual disability
• Difficulty walking or performing precise motions
• Speech or language delays
• Dysphagia (difficulty swallowing)
• Poor sucking or eating
• Excessive drooling
• Favoring one side of the body 
• Seizures

Right now, there aren’t any cures for cerebral palsy. Usually, this condition can be managed with a variety of different treatments to address symptoms. For example, anti-epileptic drugs can improve seizures while muscle relaxers can tame muscle spasticity.