Heidi's Hallelujah

05/28/2026

Heidi enjoyed swimming and spending time with her brother.

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.

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.

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.

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.

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.

05/05/2026

Sanfilippo B families please read:

Sangrail Biologics launches with SNG-101 (f.k.a. ABO-101), a clinical-stage gene therapy for patients with MPS IIIB.

05/04/2026

If you research special needs swings, you will see that most are outrageously expensive. Insurance is a pain to try and get one covered for Heidi and most companies seem to think insurance will pay the outrageous prices. Swinging is very soothing for Heidi and we finally found one that has a 5 point harness, back protector, and attachments for when she gets bigger. So thankful we found one that was affordable. Now we can enjoy her smiles and watching her body relax.

05/02/2026

UNC has done so much for MPS. This is just one example of their passion to help us fight.

04/22/2026

We had an amazing time at the UNC MPS Awareness baseball game. It was great to be around other MPS families. We watched both UNC and High Point wear MPS bracelets to help honor our kids. The announcer did an amazing job speaking about MPS. To feel love spread throughout the ballpark was heart warming. The many moments shared with other families will forever be cherished. Heidi loved Rameses!