Heidi's Hallelujah

09/08/2025

Heidi was able to meet new friends on Sunday. They played and colored maracas together.

09/02/2025

This is something that hits too close to home. I’m terrified Heidi will wander at any moment. While we have locks, gates, and alarms to keep her safe at home, we don’t have that luxury out in public. Yes we use a wrist to wrist locking leash while out in certain places. For everyone that has never dealt with a wandering child, please know it’s not lazy parenting using a leash. It’s parents who are trying their hardest to protect their child.

A moment of crisis calls for compassion.

08/31/2025

Please spend a few minutes reading this article.

Children make up half of the 30 million Americans with rare diseases, 95% of which have no cure. The FDA is moving too slowly to approve cures.

08/28/2025

All week long Heidi has been up WAY before the sun. You can tell she’s tired and wants to sleep, however, her body wont let her. She’s not fighting it or regressing, it’s just sanfilippo. I’ve given her relaxing time during the day but her little body is saying no to napping. It’s horrible watching your child want something so necessary. The frustration she is feeling is terrible. Sanfilippo kids can go on little to no sleep for days. I’ve tried just about everything I can think to do to help. So when you see me out with a big cup of coffee and bags under my eyes, I’m just doing what I can to keep my body going with Heidi’s.

08/27/2025

This is the future we would love for Heidi and why we push so hard for clinical trials, fundraisers, and treatments. Heidi’s future is uncertain. We don’t know one day to the next how she will feel or what may happen. We have put full faith in God and trust His plans above our own. I would enjoy a chance to meet Ryan.

08/26/2025

Happy 5th birthday Heidi! Time sure flies when we enjoy the moments. Keep dancing and shining your light for all to see. We love you and honored God allowed us to be your Mama and Daddy.

Enjoy what a blessing Heidi has been this past year in photos.

08/24/2025

We want to thank each and everyone at church this morning as Heidi was baptized. One thing is certain with Heidi, she loves God and shows how to live through the trials and joys. Her soul inspires those around her to seek God and live like Christ. While her words may not come, her actions show above all else. Heidi’s foundation in Christ is admirable and something we can all strive to be, a servent of God.

1Peter 3:21

08/22/2025

What an amazing honor for Heidi to be part of the auction this year! We truly have an amazing community of support. From our home to yours, a heartfelt thank you to Hague Towing, Celina Eagles, Celina Moose, and Neil and Gina Boeckman. When we say we love our village of prayer warriors, we are humbled. While we may not know every person or business in our village, we know the love of their hearts. It’s truly a miracle how God places people in your life at the right moments. We ask that everyone view the donors on each participate and thank them, whether you know them personally or just happen to stop in their business, show them the love they have shown each participate.

08/21/2025

First day of Preschool💜

08/19/2025

Some photos of our trip to Ft Myers Florida.

08/18/2025

Heidi loved the beaches by Ft Myers Florida. She played around with shells, sand, and laughed when the waves hit.

To the parents of wheelchair kiddos, Tigertail Beach at Marco Island is easy to push a wheelchair down to the ocean. Also, Bowman’s Beach has beach wheelchairs free to use.

08/17/2025

This is a glimpse of what it’s like flying with Heidi. Heidi can go from being calm to rambunctious to crying in a matter of seconds. While we have an abundant amount of her favorites to keep hands and mind busy, we know others may get frustrated. However, every airline we have flown allows us to board early so she’s not walking down the aisle touching every person she passes.