In Support of Milestones for Maddox
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Meet Maddox. đź’™
Maddox is 8 months old and bravely navigating life with a rare genetic condition called TubA1A, which has resulted in lissencephaly—a brain malformation that affects muscle tone, motor control, and overall development. From the very beginning, Maddox has been working harder than most to do the things many take for granted.
Maddox is 8 months old and bravely navigating life with a rare genetic condition called TubA1A, which has resulted in lissencephaly—a brain malformation that affects muscle tone, motor control, and overall development. From the very beginning, Maddox has been working harder than most to do the things many take for granted.
Right now, Maddox is working to get established with a Dynamic Movement Intervention (DMI) provider—Molly at PT by the Sea in Sarasota. DMI is a highly specialized, evidence-based therapy known for helping children with neurological, genetic, and movement disorders build strength, control, and functional movement. For many families, it has been truly life-changing.
Why timing is critical for Maddox:
- Maddox currently weighs 17 pounds
- Children size out of DMI at 35 pounds
- DMI intensives are recommended every 2–3 months (or at minimum every 3–4 months)
This creates a limited and precious window to give Maddox as many therapy rounds as possible while his body is still eligible—and while his brain is in a crucial stage of growth and adaptability.
A single 3-week DMI intensive costs approximately $5,270, before travel expenses. Unfortunately, DMI is rarely covered by insurance, and Maddox’s therapy is not covered, leaving his family to navigate these costs on their own.
We’re inviting you to walk alongside Maddox, follow his journey, and celebrate each milestone—big or small. His mom, Ashlee, will be sharing updates so you can cheer him on in real time and see the impact of your support.
Thank you for being part of Maddox’s village.
Your generosity, encouragement, and belief in him mean more than words can say. đź’™
Your generosity, encouragement, and belief in him mean more than words can say. đź’™
Updates
Keep up to date as needs change.
Feb 28, 2026
Another week, another 3 appointments today for Maddox
Maddox finally had his first genetics appointment after 10 months. ...
Feb 18, 2026
Another EEG
I get to share a win for Maddox and our family today. 🤍Thor took Ma...
Feb 14, 2026
Cardiologist
Today Maddox had a cardiologist appointment because his blood press...
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- Created Jan 06, 2026
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Nadine Knapp
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