My name is Marina. I am the mother of Alice—my long-awaited, beloved daughter. From the moment she was born, she filled our lives with joy. But when she turned one and still hadn’t taken her first steps, I knew something was wrong.

We had the honor to have 3 beautiful souls with this intense and life altering disease but it wasn’t all sad. The life that we lived together was full of dancing, laughter, outdoors, football, photoshoots, dirt, princesses and a level of laughter, music and joy that could raise a roof!

Aria Laurissa Vantassel was born on January 7, 2021. It was the best day of my life. My first-born child and I got the baby girl that I always wanted.

In March 2023, Grady & Jace were diagnosed with  PKAN. Early in life we always had some inclination that something was different and affecting their development. Through numerous doctor's visits and therapies throughout their childhood, we still had no answers.

My name is Caroline Sloan, and I was diagnosed with PKAN in 2021.

My husband and I are from North Dakota, we had Everett in July of 2020. Around 11 months old we started noticing he has very uncoordinated falls and had trouble learning to walk.