Heidi's Hallelujah

02/26/2026

We cannot wait any longer. We need FDA approval! My little girl is a fighter but she cannot control how her body is affected with each passing day. Every day it takes the FDA to deny approval is a death sentence for our kids. I’m not going to sugarcoat it. It’s a fact. And yes, we as parents of sanfilippo kids, are more terrified of the pain and suffering our kids will endure with each passing regression.

02/23/2026

Rare Disease Day this Saturday! Make sure to show your stripes and/or wear jeans.

02/19/2026

The smell of spring, birds chirping, and 70° weather. Beautiful day to explore nature as it begins to awaken from the winter slumber.

02/16/2026

Nothing like a sunny warm day to explore nature. Thankful to have a beautifully secluded walking path 5 minutes away. Heidi was content sitting and playing with blades of grass.

02/14/2026

Happy Valentine’s Day! Heidi enjoyed some Panera Bread, shoe shopping, and hiking.

02/13/2026

Today marks 2 years since Heidi’s diagnosis of Mucopolysaccharidosis type 3 (Sanfilippo syndrome). After fighting symptoms for a year prior to diagnosis, we never expected the results to be terminal. Hearing there’s no cure and to just love on your child while she’s here on earth was the biggest heartbreak. The emotional roller coaster is hard. Negative emotions seep in at random times and fighting through those is something our family has had to navigate through in our own ways. We all can go from emotional highs to fighting the drowning feeling.

We are thankful for our Heavenly Father carrying us through the hard times and celebrating our wins. Without our faith, I’m not sure how we would have gotten through many days. We have laid it all down for God to handle which has lifted a heavy burden from us. We still have our days of failing but God reminds us to lay it at His feet.

Heidi does remind us on hard days to praise God. She is so happy and loves to dance to Christian music, especially Colton Dixon’s Up and Up song. Heidi can turn anyone’s bad day into a praise session.

For today, we ask all of you to raise a little Hallelujah and dance to your favorite Christian song. If you don’t have one start with Heidi’s favorite, Colton Dixon’s Up and Up. Let’s all dance like David.

This photo below was the very last photo of us shortly before I received the devastating news.

02/05/2026

⚾💙 Join Us for MPS Awareness Day at the Ballpark! 💙⚾

We’re excited to invite our community to MPS Awareness Day at the University of North Carolina Tar Heels Baseball Game as UNC takes on High Point University.

📅 April 21, 2026
⏰ First pitch at 6:00 PM ET
📍 Bryson Field at Boshamer Stadium
235 Ridge Road, Chapel Hill, NC

🎟️ MPS families receive complimentary game tickets.
👉 Register here on the weblink or scan the QR code: https://tinyurl.com/UNCMPSBaseballGame

Come out to support MPS awareness, cheer on the Tar Heels, and spend an evening together at the ballpark.
We hope to see you there! 💙💜⚾

02/04/2026

This is a huge win for every person with a disability. While we did only have certain counties that had a program similar, it only popped up in the county that you registered/lived in. Now, all the times we travel out of the county, we know Heidi’s care is broadcasted to first responders. However, a National program is desperately needed. We leave Ohio quite a bit so I have to ensure all her medical needs are in eyesight of any first responder. Then they have to take the time to read every medical info. It would be better for a dispatcher to report it while first responders are heading to a scene.

House Bill 144, also known as Keith's Law, went into effect in Ohio on January 19. The law improves interactions between first responders and people with disabilities. It does this by giving first responders advance information about a person's specific needs.

People who want to register under Keith's Law can submit a disability verification form to the Ohio Department of Developmental Disabilities: https://bit.ly/4sWtznM

To learn more about House Bill 144, visit: https://bit.ly/4qF0qMm

02/02/2026

Mark your calendars for this year’s fundraiser.