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Team Cannon CAN

A mom on a mission to save her bestie from a rare genetic disease called Sanfilippo Syndrome 💜

08/24/2025

If you forget the way to go
And lose where you came from
If no one’s standing beside you
Be still, and know I am

08/23/2025

Just chillin with his bestie before heading to school! In case you’re wondering, he drags this thing to bed too!

08/22/2025

Cannon seems to be adjusting to 2nd grade. He’s exhausted when he comes home, and is typically crying or yelling at Mommy when he gets off the bus, but all it takes is some cuddles and a snack and he seems to settle. His sleeping schedule is off and he’s pulled a few all nighters recently - we’re working to get him in a better routine, but he’s become less and less receptive to melatonin. Example - he had 10mg of melatonin and hour ago, and he’s still wide awake. He’s already thinking about Halloween, and didn’t understand why he couldn’t bring this skeleton to school today 🤦🏼‍♀️ He continues to keep us on our toes, but we wouldn’t have it any other way 💜

08/14/2025

This little guy had his first day of 2nd grade today! After pulling an all nighter, I didn’t know if he was going to make it - but he did! He got a pep talk from his big brother, and happily ran on the bus! I love how much he loves school 💜

I couldn’t help but think, Cooper was Cannon’s age when we learned of Cannon’s diagnosis. Cooper grew up over night - my heart hurts thinking how heavy that had to have been on Coop’s heart - but Coop has always been Cannon’s ride or die - they are best friends and the love they share is fierce.

I hope both of these boys have an amazing school year 💜

08/04/2025

✅ ACTION ALERT: Help save kids in only 20 seconds.

🧬 Children with Sanfilippo syndrome and other rare diseases don’t have time to wait.

The FDA has rejected a promising gene therapy, despite admitting that the clinical data is strong. Now, families may have to wait a year or more while their children continue to decline. But momentum is shifting at the FDA and we have a small window to speak up.

📢 Sign this urgent letter to the FDA asking for a faster review and a meeting with families:
https://unc.az1.qualtrics.com/jfe/form/SV_0ivKzumYy787guq

Deadline: August 6

Your voice matters. Please sign and share.

07/26/2025

This little guy finished his first week of summer school today! I am SO incredibly proud of him! Summer school is not held at his normal school, he does not have his usual bus driver, and he does not have his usual paras. Thankfully, he does have his usual teacher, so he had a familiar face 🙂 There are also only a few kids in the class, and it’s an entirely different routine than what Cannon is used to. His aide on the bus, he had in preschool, and I always tell people Cannon never forgets a face, and he certainly did not forget Miss Brandi! The biggest challenge has been getting out of bed before 8 am, because the bus comes at 8:05 - I may or may not get him dressed for school the night before 😉 Cannon eagerly jumps on the bus every day, and comes home excited to tell me about his day. He is so excited for the school year to start and I am so thankful that Cannon loves school as much as he does, and has the absolute best team supporting him. So Happy Fri YAY from Cannon! 💜

07/21/2025

This little guy is SO excited for his first day of summer school!

07/18/2025

I told Cannon it was time for bed… Cannon decided it was time to sit it the middle of the kitchen and meditate. I love this kid 💜

07/15/2025

Cannon has used a “chewy” necklace for years - lately he’s refused his chewy and I’ve had to stop him from chewing on his fingers… but now he’s taken to sucking on his thumb. His little thumb is covered in teeth marks afterwards, so hoping I can find new chewy necklaces that interest him so he will give his little fingers a break! 😢

07/07/2025

This little guy was exhausted after jumping in his bounce house this afternoon, and he was struggling to regulate his emotions. Cannon’s happy place is, and always been, being outside. So we gathered his stuffies and his iPad and hung out in the driveway…. Eventually we made it to a little comfier of a place on the back porch 🙂

Keeping this little guy happy and regulated is a challenge that’s bigger some days than others, but he is absolutely worth it 💜

07/05/2025

Happy 4th of July! Cannon is lucky enough to be able to enjoy the fireworks from the comfort of his bounce house in the backyard 🙂

06/24/2025

I was playing around with AI while I was waiting for Carsyn to get out of hockey this morning…. Now Cannon wants Sonic to come to his house so they can jump on the trampoline and race 😂

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Crown Point, IN
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