PKAN Families

We want to use this website to provide a voice and platform for other families dealing with a devastating PKAN diagnosis. We will be highlighting stories from other PKAN Families on this page in the future. If you would like to share your story with us, please contact us at info@lovingloic.org.

Featured

Daron, Aubrey and Angela Jessop

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’s PKAN Story

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.

Grady & Jace’s Story

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.

Caroline's Story

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

Everett’s Story

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.

John Luke’s PKAN Story

Our family’s PKAN journey began with our son, John Luke. He had just turned 5 years old and one day, out of the blue, we noticed he wasn’t using his right arm at all. It was like he had a stroke and was no longer able to use it. We immediately called his neurologist and got an MRI scheduled.

PKAN Families

Our Journey

Support Loic’s Family

Understanding PKAN