Heidi's Hallelujah

11/27/2025

Happy Thanksgiving! May today you remember all the great things that sustain your daily needs and those that bring joy to your life.

11/27/2025

With 70 degree weather, who wouldn’t enjoy making music. Trying to get some much needed outdoor time before the cold front moves in.

11/24/2025

We’re excited to announce that GGC has received a $156,000 research grant from the Cure Sanfilippo Foundation to accelerate diagnosis and treatment for Sanfilippo syndrome (MPS IIIA & IIIB) — a rare, devastating disorder sometimes called “childhood Alzheimer’s.”

Led by Dr. Rich Steet, GGC’s team will develop the first-ever functional cell-based platform to better understand genetic variants and test nearly 1,800 FDA-approved drugs for potential new treatments.

This collaboration brings new hope to families facing Sanfilippo syndrome and advances our mission to combine cutting-edge science with compassionate care.

Learn more about this exciting step forward: 🔗 https://ggc.org/greenwood-genetic-center-awarded-grant-childhood-alzheimers/

11/22/2025

Heidi spent a couple of hours at church tonight with special buddies respite night. She played with friends, had supper, and made a craft. I absolutely love homemade gifts and this one will have a special place on our tree this year.

11/18/2025

We all need a little down time to relax and unwind. Heidi may only sit for a few minutes but even she takes a moment to rest her body.

11/16/2025

I love these hands I’m holding. I’m sharing this today in support of World Sanfilippo Awareness Day. Not all parents get to watch their kids grow up healthy and become adults. Sanfilippo Syndrome is a devastating fatal childhood disease which causes severe dementia and takes away a child’s skills early in life. Very few people have ever heard of it and I hope you’ll join me in sharing a photo of you holding the hands of the ones you love to help spread awareness for Sanfilippo Syndrome. With awareness comes more research to find a cure and HOPE for the children and families.

11/15/2025

Don’t forget to wear your purple tomorrow for World Sanfilippo Day!💜

11/09/2025

Mark the date on your calendar for Sunday, November 16th! We ask that you wear purple shirts or Heidi’s fundraiser shirts. On November 16th, we will be asking each of you to hold the hands of your children and post it on Facebook in support of raising awareness of Sanfilippo Syndrome. Help us fight for a cure.

11/08/2025

Beautiful weather today for a nice mile walk around the neighborhood. Heidi’s little legs work hard on the uphills. Her favorite part is by the woods where she can watch the leaves fall.

10/26/2025

Happy Sunday everyone.

We’ve had a few rough days here and there, however, we continue to praise God. We find comfort on our hard days knowing God is holding us. We believe God is working wonders in and through Heidi. Heidi loves everyone and uses what God has given her to touch the lives of those around her and those she meets in passing. Even with Heidi’s diagnosis, she thrives in life. God is moving mountains with each moment for Heidi. Heidi is leading people to Christ and definitely showing people that a diagnosis does not define you. God is working His miracle in His time. We may not understand why Heidi. However, we don’t need a reason to go out and continue to do God’s will with grace.

We ask that you find the time to brighten someone’s day. Extend mercy to those you see struggling. You just might learn something new.

https://youth.be/O_ngLn0oZCo?si=Zf3JdBEcAQs7aixfysinnint own

This is Open Resources, The lyric video for "Yahweh We 🤍 You" by Elevation Worship and Joe L Barnes."Yahweh We 🤍 You" is available now on the album, When W...

10/24/2025

Heidi (Snow White) had so much fun running around with kids during the Trunk or Treat.

10/18/2025

Please share so that any children’s specialist can join this master class. From therapists to specialized doctors should join to learn more about what our family and every MPS family is facing and how we can collectively come together to fight for our children.