Heidi's Hallelujah

09/17/2026

I have no words to express how grateful God has blessed every sanfilippo child. The FDA approved the first ever treatment for Sanfilippo type A kids!!💜 Now we wait to find out how parents can get the treatment to their kids and what stipulations the FDA puts on Ultragenx and potential patients. We are beyond ourselves with so many praises to the hands God has placed to achieve what use to be a death sentence for our kids. Now we wait patiently for treatment for types B and C.

The U.S. Food and Drug Administration today approved Fayuvi (rebisufligene etisparvovec-hopf), the first treatment for pediatric patients with mucopolysaccharidosis type IIIA (MPS IIIA), also known as Sanfilippo syndrome type A.

09/14/2026

Dear FDA,

I know you have been doing your due diligence in researching the UX111 for Sanfilippo. Please listen to us parents as we plead with you to approve it. We are asking you to be part of our army for our little kids to protect them and give them a chance. Help us have an option when kids are diagnosed. We don’t want another parent to ever hear “go home and love them with the time they have”. The research has shown massive promising results. Our kids need you. We have cried out for God to send us help. Right now, you are our help from God. Please focus on letting us parents decide if our kids take UX111. Don’t be the red tape that crushes our souls again. Our hearts cannot take much more. Rescue our kids! Give them a fighting chance to smile a little longer, laugh with all their belly joy, sing a little louder and shine for God’s glory for more days here with their families. Be our hallelujah!

To those that don’t know, the FDA should have an approval or denial of UX111 by September 19th.

The official lyric video for Lauren Daigle's "Rescue" from her albu...

08/27/2026

Thank you everyone for all the birthday wishes! Heidi had a beautiful day surrounded by loved ones.

08/26/2026

Happy 6th birthday Heidi Raya!! 🎂 🎈 This last year has flown by with many changes for Heidi. We are so grateful for the many blessings God has provided Heidi. Keep being our Heidi Bug and showing the world how magical life can be when embracing the little blessings daily. Today we ask everyone to stop and watch the leaves sway in the trees. Heidi can spend hours throughout the day enjoying the calming of swaying leaves. We also ask that you jam out to Heidi’s favorite song Colton Dixon Up & Up.

08/25/2026

Heidi’s first day of Kindergarten💕 She’s excited now but let’s see how she does with separating from her Mama.

08/14/2026

Heidi was worn out tonight for back to school night. She will begin kindergarten in just a couple of weeks. While the transition will take some time due to figuring out the new routine, she will enjoy meeting new friends, teachers, and aids. I know she will enjoy seeing all her specialists again. Enjoy the chaos of taking a great photo. Heidi was physically done by the time we tried the photo backdrop.

07/28/2026

Heidi enjoying some bounce time before OT equipment evaluation. Goal this year is for insurance to accept a new car seat and bath chair for Heidi. We are looking at a swivel out 5 point harness car seat to make it easier for me to get her in and out. Right now I have to fold Heidi tightly so I don’t hit her head on the van while also making sure to not whack her hips on the car seat. The swivel out car seat will allow me to put Heidi in the seat, strap her in and then swivel her to proper position for riding. As for the bath seat, Heidi wants to shower but doesn’t want to stand up. This will allow me to safely shower her without falls or breaking my back with leaning into shower.