Heidi's Hallelujah

Heidi's Hallelujah Heidi's journey to spread joy while we raise awareness of Sanfilippo Syndrome type A.

This Sunday is opening day! Come out and support the players beginning at 4pm in Rockford.
06/01/2026

This Sunday is opening day! Come out and support the players beginning at 4pm in Rockford.

Heidi is working on serial casting to stretch her tendons in her ankles again. First round didn’t go well as she was scr...
05/29/2026

Heidi is working on serial casting to stretch her tendons in her ankles again. First round didn’t go well as she was screaming in pain and refused to walk. We took those off early. Today we did another round but not pulling her tendons as much. Heidi was also given a walker to help alleviate some pain. Here’s to hoping she makes it more than 2 days like last week.

05/28/2026

When it comes to sleep, Heidi does not like to fall asleep until bedtime. Every time we fly, the descend almost puts Heidi to sleep. I finally had a moment to record during today’s landing.

Heidi enjoyed swimming and spending time with her brother.
05/28/2026

Heidi enjoyed swimming and spending time with her brother.

International MPS Day💜 Heidi is one tough little girl with a joy for life. Today we celebrate Heidi and all the MPS figh...
05/15/2026

International MPS Day💜 Heidi is one tough little girl with a joy for life. Today we celebrate Heidi and all the MPS fighters. Specialists appointments never stop and today we spent the morning with neurology. We greatly appreciate Heidi’s neurologist as she is a huge advocate for every rare diagnosed child.

Tomorrow is International MPS Day💜 Wear purple to show support for all the MPS kids and families. To honor Heidi, we ask...
05/14/2026

Tomorrow is International MPS Day💜 Wear purple to show support for all the MPS kids and families. To honor Heidi, we ask you to smile a little bigger, take a moment to enjoy nature and praise God. We all know Heidi loves big and we believe small acts of kindness leads to a joy filled life.

Heidi seemed to enjoy herself yesterday with learning bussing rules. So thankful the school included the handicap bus. H...
05/12/2026

Heidi seemed to enjoy herself yesterday with learning bussing rules. So thankful the school included the handicap bus. Heidi’s wheelchair is transit approved, even though we don’t need the wheelchair accessible vans for home yet.

Heidi had a wonderful time at the Daddy Daughter Dance. Huge thank you to the FFA for hosting and the Berrys for their h...
05/11/2026

Heidi had a wonderful time at the Daddy Daughter Dance. Huge thank you to the FFA for hosting and the Berrys for their horse and carriage ride. Heidi had to wear a beautiful yellow dress like Belle.

Heidi requires all kinds of specialists. With that said, it has been a struggle to find a dentist to see her. After seek...
05/06/2026

Heidi requires all kinds of specialists. With that said, it has been a struggle to find a dentist to see her. After seeking help from a great dental hygienist friend, we finally found a dentist who will evaluate, diagnose, and clean Heidi’s teeth. However, Heidi needs sedated for any dental work. Heidi’s orality is intense due to sanfilippo. If you come close to her mouth with anything, she will open. Problem becomes, once something touches inside her mouth, Heidi clamps down hard. I’ve been bit enough to tell you how quick she is and also how to get her to release. The dentist wanted some photos of Heidi’s teeth. Let me just say, that was a 2 hour process to get all those photos.

Thank goodness for iPhone Live Photos that allowed me to edit the exact photos I needed.
I have to share these amazing photos I was able to capture. She was a struggle and the photos highlight it beautifully.

To my dental friends, you fully understand what I was trying to capture.

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Rockford, OH

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