Christi and her husband have navigated both the pain of receiving a devastating diagnosis and the beauty of choosing this life again through adoption. That decision hasn’t always made sense to people around them.

As my body attempted to right itself, I realized I had to fight for my own medical attention and my own life. I remember having to beg my parents to take me to the ER or to a doctor when I was horribly ill, on the floor, too sick and stiff to push myself up. It took 22 years until the UCLA Neuromuscular Clinic diagnosed a severe variation of stiff-person syndrome (SPS) with the progression of my disease. The neurologist believed I had a form of self-correcting cerebral palsy

Maddie Lou’s journey is one marked by unexpected challenges. At 16 months old, she was a healthy, neurotypical toddler. Just four months later, she received a life-altering diagnosis: Atypical Rett Syndrome.

“I remember feeling completely overwhelmed,” Madhura says. “Suddenly, we were trying everything—steroids, a ketogenic diet, multiple medications, and eventually, a VNS implant. She was the youngest patient at the hospital to get that device—just 27 months old.”

Lovingly known as “Lo,” Lola was diagnosed just before her first birthday. That moment changed everything for her family. Blind, deaf (she wears cochlear implants), and unable to walk or talk, Lola also faces serious complications with her liver, kidneys, bones....

Written by: mejo At mejo, we have the privilege of connecting with extraordinary families navigating complex rare diseases. Today, we’re...