Racing Towards a Cure 2026

Rilynn was diagnosed with Pyridoxine Dependent Epilepsy (PDE), a rare genetic disorder in 2022 a month before her 1st birthday. Things changed after our appt at Sanford Children’s that evening.  She was placed on a very strict diet with very limited to no protein and limited dairy. We measured everything and tracked how much she ate everyday. Currently she can only have around 14-16 grams of protein. Every 6 months she has bloodwork done to make sure she’s going in the right direction - not too much protein yet enough so her body can still continue to grow. If she gets too much, it would slow her development. 

We cannot thank her medical team at Sanford Children’s along with Bigstone Therapy for helping her continue to grow and continue to develop into a strong little girl. We have our bumps from time to time but try to find the positives. 

She’s a girl that you can see in public and seems like a typical happy, smiley kid. But inside, it’s a whole different story. But would do anything for her - 

HER FIGHT IS OUR FIGHT 💜 

And we are beyond grateful to say she’s been seizure free for 5 years by maintaining her diet and medication. 

Thank you for your support 

Rilynn and her family 

Ready. Set. Cure PDE! 💜