Heidi's Hallelujah

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

Good luck Tarheels! Rooting from Ohio.
06/22/2026

Good luck Tarheels! Rooting from Ohio.

Heidi had a blast at Fellowship of Christian Athletes All Abilities camp. Her buddy Nancy was fantastic. This camp was t...
06/20/2026

Heidi had a blast at Fellowship of Christian Athletes All Abilities camp. Her buddy Nancy was fantastic. This camp was the largest in the state of Ohio for FCA this year. Thank you to Nancy and all the other volunteers for allowing our kids the chance to enjoy a morning celebrating God and playing sports.

Game 1 completed. Heidi was so happy to be back but she was exhausted. Thank you to everyone that came out to support.
06/08/2026

Game 1 completed. Heidi was so happy to be back but she was exhausted. Thank you to everyone that came out to support.

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.

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Rockford, OH

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