Cure Jax

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Cure Jax Jax loves baseball, fire trucks, being outside, and especially his family. He has Sanfilippo Syndrome Type B — a rare, progressive condition. Help us help him.

Time matters with Sanfilippo. Your support will help Jax find a cure.

10/17/2026

Pier 39 after screening appointments was just what we needed. Jax was ready to go after Mom got pictures in front of Alcatraz, sea lions are "dog dogs" and Jax is becoming expert level at arcade games 💪🏻


10/15/2026

The call we have been waiting for came Tuesday night and we were on our way! We are one step closer to getting Jax treatment but still have to make it through the initial screening ❤️


10/14/2026

Long weekends, fall mornings and a cup of coffee cooking breakfast outside 👌🏻 We will take full advantage anytime we can to come down and enjoy our place. The thoughts of Sanfilippo Syndrome, appointments and applying for clinical trials all seem to fade away here. Jax is just Jax here at our place, the one that truly feels like home ❤️


10/14/2026

Once the rain finally stopped we spent the rest of our long weekend at Jax's favorite place ❤️ Our cabin is coming along wonderfully, built by Jax's personal contractor, Dad. We have come so far from sleeping in a 1972 camper with 4 kids and 2 dogs while their Dad cleared the land for the cabin we were dreaming of ❤️

When we bought this property we wanted the kids to have a place to get away and grow up playing in the dirt, the creek and having camp fire smores. We wanted a place to unplug. Little did we know how important that would be to us post diagnosis. This is the only place Jax doesn't have to wear a harness all weekend to keep him safe. He can run, play and be free to chase his brother, chickens and the SXS. Watching him here gives us a break from remembering the diagnosis, the prognosis and what Jaxs future holds.


10/12/2026

Jax had blood work done the other day and was not very happy with Mom and Dad. So he got to go on a ride in Nana's Jeep to go pick out snacks ❤️


10/11/2026

Jax was watching football at Nana and Papaws and decided to get in on the action 🏈 Happy Sanfilippo Sunday friends ❤️


10/10/2026

Lots of Doctors this week but Jax always seems to keep it fun 😂 He loves to play Doctor while we wait ❤️

10/10/2026

Entering the world of a terminal rare disease diagnosis was terrifying! We were so lost and so clueless 😂 We have learned so much since February 18, 2026. About our son's diagnosis, medical terminology, history of treatments failed and hopeful treatments on the horizon for Sanfilippo Type B. We continue to learn, advocate and most importantly love Jax everyday and try to give him the best life possible ❤️


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Dayton, OH
45424

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