Team Cannon CAN

Team Cannon CAN A mom on a mission to save her bestie from a rare genetic disease called Sanfilippo Syndrome šŸ’œ

Sometimes I look at this little guy when he’s sleeping, and I wonder about his dreams…. If you know Cannon, you know he ...
01/27/2026

Sometimes I look at this little guy when he’s sleeping, and I wonder about his dreams…. If you know Cannon, you know he always has ā€œan ideaā€ and you know the wheels in that little mind are always turning. Last year, when we had to put our dog, Tank, down, Cannon became aware of the concept of death. Ever since then, he will make comments in reference to wanting Tank back, and he will often tell me, in regards to our other dog, Payton, ā€œPay Pay no die. Pay Pay no leave Cannon.ā€ Of course, that is always heart breaking to hear… but the other day, what Cannon said tore my heart in pieces. We were goofing around and laughing, and suddenly Cannon said ā€œI no want to die. I want to stay with mommy.ā€ Cannon is NOT aware he terminally ill, this is said in regards to the fact he has gained awareness that our dog died, and isn’t coming back. But in that moment, my heart broke. I’ve always found comfort in the fact Cannon doesn’t comprehend he is sick… and that because of that, he doesn’t fear death - but his comment struck me to my core. This little boy wants to be here - living, and experiencing all of the things life has to offer! He loves being around his family and friends, he is fascinated by animals, he is curious, adventurous, daring, and filled with so much love. I absolutely cannot imagine a world without Cannon in it. He is a light for so many, and his life is absolutely a life worth saving šŸ’œ Life may not look like how I envisioned it to be, but I know I was meant to be this boys mom, and I will never stop fighting to give him the life he deserves.

This little guy did great at his Genetics appointment today! In the past he’s been incredibly anxious at the hospital an...
01/14/2026

This little guy did great at his Genetics appointment today! In the past he’s been incredibly anxious at the hospital and I’ve had to carry him through the hospital, but not today! He was excited to see the fish tank, and that prompted him wanting to get a fish tank at home. So his ā€œdoctor appointmentā€ became a ā€œscreening to see if he was ready to be a fish ownerā€ - he showed his muscles off to the doctor, peed in a cup like a champ, and willingly took his hat off for them to meaaure his head, although he did let them know he would NOT be getting a haircut šŸ˜‚ He did shed a couple crocodile tears when they drew his blood, but we reminded him even super heroes cry sometimes. It turned out he is in fact ready to be fish owner šŸ˜‰ whatever it takes to keep this boy smiling… He will be having his hearing tested, as we do have some concern he’s had some loss of hearing, and he will also be having an MRI of his brain and spine, as well an EKG in the coming weeks. His new doctor seems to be very thorough, and we are hopeful his labs and testing don’t cause any reason for concern. Cannon continues to live up to his name, he is a ā€œcannonballā€ in every way…. He loves life and life loves him back. Keep showing the world your life is a life worth saving, bestie. I love you BIG šŸ’œ

We’re just over here doing big things! A couple weeks ago Can made it through big sissy’s entire hockey game! A couple n...
01/09/2026

We’re just over here doing big things! A couple weeks ago Can made it through big sissy’s entire hockey game! A couple nights ago, he watched her at her swim meet! The best part? He did it without his iPad or chewy necklace…. This might not sound like a big deal to some, but for Cannon it’s huge! You amaze me every day Bestie šŸ’œ

Cannon believes in ringing in the New Year topless and stuffing his face with ice cream. As we head into another year I ...
01/01/2026

Cannon believes in ringing in the New Year topless and stuffing his face with ice cream.

As we head into another year I am thankful that Cannon continues to do well in so many ways. He is still fortunate to have full mobility and loves running, jumping, dancing and being outside. He continues to add words to his vocabulary and continues to be incredibly resourceful when it comes to communicating his needs. We have introduced a communication device, but because Can has always been incredibly resourceful when it comes to communicating his wants & needs, he’s been a bit resistant with using this device - but we know getting him used to this now will help communication in the future. We had a rough patch where Cannon was really struggling to regulate his emotions and had become incredibly aggressive. He was struggling at school and coming home absolutely exhausted. His team worked with him, and he now has his favorite ā€œschool momā€ as his one on one para - her and Can’s teacher do an amazing job at advocating for Cannon, adjusting his day to meet him where he’s at, and working with me so we can all try to problem solve on the difficult days. His school day looks different than most kids, as he doesn’t spend too much time on academics, but what Cannon gains is much greater. He is able to interact with his peers which helps him to maintain (and grow!) his vocabulary. He spends a lot of time being active, and keeps those muscles working hard! He enjoys doing various projects, engaging with all of the staff, and simply being around people he loves so much. He sees his geneticist in a few weeks, and we have some small concerns we will address with his doctor but overall he is doing well. Thank you for your continued love & support. It means the world šŸ’œ
Here’s to an amazing 2026!

Cannon enjoyed decorating cookies for Santa on Christmas Eve and tracking Santa throughout the evening on his iPad. He w...
12/26/2025

Cannon enjoyed decorating cookies for Santa on Christmas Eve and tracking Santa throughout the evening on his iPad. He woke up at 2 am panicking where his iPad was because he needed to track Santa, I was just thankful he didn’t walk downstairs at 2 am after telling me so many times he wanted to hug Santa šŸ’œ In the morning, he once again pulled the iPad out right away - but not to track Santa, to pull up his Amazon list for reference as he opened gifts šŸ˜‚ Santa pulled through! He is quite the happy little guy with all of his new stuffies, another excavator because he breaks them all šŸ¤¦šŸ¼ā€ā™€ļø a bunch of random figurines, and craft supplies but he wasn’t so much a fan of new pajamas and socks, giving those the thumbs down šŸ™‚ watching Cannon’s joy and excitement is so much fun and I am so thankful he is able to continue to have moments like these. wishing you and yours a very Merry Christmas šŸŽ„

Another pre-diagnosis Christmas pic, Cannon found this headband in the house and would wear it around - he’s never been ...
12/24/2025

Another pre-diagnosis Christmas pic, Cannon found this headband in the house and would wear it around - he’s never been one to worry what anyone thinks šŸ™‚ Tomorrow is Cannon’s favorite day of the year! The house has been decorated since the beginning of November, but this morning I’m turning it into a complete Christmas Wonderland while Cannon is at his besties. I can’t wait to see his little face when he walks in the door. Seeing him believe in the magic of Christmas makes my šŸ’œ so happy.

Just a boy and his dog snuggling up on the couch watching Paw Patrol. Payton is the absolute best dog, she is so protect...
12/23/2025

Just a boy and his dog snuggling up on the couch watching Paw Patrol. Payton is the absolute best dog, she is so protective of Cannon and their bond is truly unbreakable šŸ’œ

I am so incredibly proud of this little guy! Public places are hard for him and he is not a fan of going to his big sist...
12/20/2025

I am so incredibly proud of this little guy! Public places are hard for him and he is not a fan of going to his big sisters hockey games - it’s too cold and too loud for Cannon’s liking (he also frequently shouts ā€œbe nice!ā€ as his big sister is the only girl on the team and Can isn’t a fan of the roughness!) today I had no choice but to bring Cannon and I figured we’d end up in the car waiting for the game to be over - this little guy watched and cheered the entire game! Making it even more amazing is the fact Cannon did this without wearing headphones, he never utilized his chewy necklace that typically doesn’t leave his mouth when he’s struggling to regulate or overwhelmed, and he only used his iPad for a distraction for maybe 10 minutes. This may not sound like a big deal to many, but this was a huge step for Cannon. Keep moving mountains, Bestie. Big sis loved seeing (and hearing) Can in the stands, and the way he ran up to her after the game to hug her melted my mom heart. This little boy has so much determination, and a whole lotta heart. I love you BIG bestie.

Throwback to one of my favorite pics of Can at Christmas šŸ’œ he has ALWAYS loved Christmas and he’s so excited to be on br...
12/20/2025

Throwback to one of my favorite pics of Can at Christmas šŸ’œ he has ALWAYS loved Christmas and he’s so excited to be on break now and do all the fun Christmas things!

I told Cannon the dog could not come in the car with us. Spoiler alert. The dog came in the car with us. Cannon handed m...
12/17/2025

I told Cannon the dog could not come in the car with us.

Spoiler alert. The dog came in the car with us. Cannon handed me my phone to take their picture as if to remind me it’s Cannon’s world, and I’m just living in it šŸ’šŸ¼ā€ā™€ļø

Keep ruling the world, bestie. Keep letting that smile light up a room. And never let anyone dull your sparkle.

This is Cannon. Cannon lives his life unapologetically, and rightfully so. Cannon is outgoing, creative, silly, loving a...
12/16/2025

This is Cannon. Cannon lives his life unapologetically, and rightfully so. Cannon is outgoing, creative, silly, loving and not to mention loud! I don’t take Cannon to things where his loudness and other behaviors may be disruptive, as I accept some things are simply not the best fit for him, and that’s okay! I can’t change Cannon’s loudness, or the way his little mind works - and even if I could, I wouldn’t. Some days are challenging, some days Cannon really struggles to regulate his emotions. But even on the most challenging of days, I am grateful. I’m grateful because I don’t know how long I have with Cannon, and I will soak up every moment. With that being said, I will not apologize for Cannon being Cannon. If you see a child struggling to control emotions, or being loud, or acting in a way that you don’t understand, maybe stop and think would you want someone judging your book without reading your story? I am always happy to educate anyone about Cannon’s battle with Sanfilippo Syndrome. My child is not less than. My child is not an inconvenience. My child is fighting a battle no child should ever have to fight. I will NEVER dull his sparkle to make you feel more comfortable.

Live your life out loud Bestie, mamas got you - always & forever šŸ’œ

Yesterday morning was rough. Cannon wanted a specific stuffed animal and after looking through every bin, we couldn’t fi...
12/12/2025

Yesterday morning was rough. Cannon wanted a specific stuffed animal and after looking through every bin, we couldn’t find it. It was time to leave for school, and Cannon sat down in one of the tubs of stuffies and refused to get up. Most days, I have a lot of patience, but yesterday I was struggling to maintain that patience. After I finally got him to school and came home and cleaned up the stuffed animals laying all over the playroom, I remembered how some day I’ll wish I was picking up his stuffies. Someday I’ll wish I was hearing his sassy voice yelling ā€œsorry!ā€ (As in tough luck, mom!) as I try to get him moving faster so we can get to school on time. Someday, all I’ll have is the memories. The days bring many challenges that most people will never truly understand, but if there’s one thing I can say this journey has taught me it’s that life goes quickly, soak up the small moments, look for that little bit of joy on even the most challenging days, love fiercely, and never let go of hope. šŸ’œ

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Crown Point, IN
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