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Team Cannon CAN

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

10/09/2026

Cannon’s big brother, Connor, goes to school at IU, 3 hours away, and Cannon hadn’t seen him since August. Connor came home for the weekend yesterday and Cannon was SO excited to see his big brother! Bonding over some Roblox 💜

10/02/2026

Mornings with Cannon are always a wild card … he typically tells me for the first hour he’s awake “mommy I no go school. Sorry” I have learned to just say “ok you can stay home!”, because once he’s eaten something and got his iPad time out of the way, he realizes he doesn’t want to stay home with mommy all day. But then it’s on to what he is going to insist on bringing to school, this week it’s a pumpkin… well it started as one pumpkin at the beginning of the week, and increased to 2. There is no negotiating with Cannon, once he has made up his mind, it’s a done deal. He also enjoys having a dance party in the driveway and running up the sidewalk as though he is in a race, not surprisingly, he always wins! Lately, he also insists on wearing sunglasses, even if it’s raining. Sometimes he insists on kissing things like my car or the trees goodbye, but today it was the lone pumpkin left on the porch. By the time he gets on the bus, I am worn out! Even though mornings are sometimes down right exhausting, they’re also my favorite time of day. He is SO excited for a new day, and he is filled with pure happiness as he dances and runs outside. Being Cannon’s mom is truly the greatest gift 💜

09/28/2026

4 years ago, I was having a rough morning… I had a chaotic work day scheduled, and Cannon was not cooperating. I was frustrated and overwhelmed… but little did I know, that “rough” morning was about to be the least of my worries. 4 years ago I got a phone call that literally brought me to my knees. My best friend, my side kick, my youngest baby, was dying. There is no cure for Sanfilippo Syndrome, and at the time, there was no treatment either. How could this outgoing, silly, mischievous, happy, hyper, loving little boy be dying? I had fought doctors for months to listen to me, they thought I was crazy, and I wanted that phone call to prove them right - that I was just a crazy mom who was over thinking things and needed to get off of the internet and stop thinking she was medical expert 🤷🏼‍♀️ In the days that followed doctor appointments were made, tears were shed, and tough conversations were had as we shared the news with family and friends. As we faced the reality of Cannon’s future, knowing eventually Cannon would lose his speech, his mobility, and even his ability to eat before ultimately being taken far too soon, with a life expectancy of mid to late teens, it was clear there was only one choice - turn pain into purpose, and give this boy the best life while he’s this side of Heaven. Some days are hard, really damn hard. But so many days are good. 4 years later and Cannon is adding words to his vocabulary, and continuing to put words together to make sentences. He may not have a full vocabulary, but he uses multiple methods to communicate, and the boy knows how to get his point across! He does get stiff which will result in a limp occasionally, but he’s still running, jumping, and climbing - even if he tires more easily. Pretty sure his favorite words are “mommy! I wanna EAT!” He struggles with regulating emotions, and he can be very aggressive when he’s unable to regulate his emotions. He has no concept of danger so he definitely keeps me on my toes. And 4 years later, and he still exclusively wears Sonic clothing 😂Life doesn’t look the way I envisioned it, but I would choose Cannon over and over again. The fear of losing him can be debilitating, but the love he gives, and the joy he brings keep me going - he has changed my life in so many ways, and I am so lucky that I get to experience life with him. We won’t stop fighting, we won’t stop believing there is hope, and we won’t stop living, because every day is truly a gift.

Keep fighting, bestie. Keep showing the world how bright your light is, and keep moving mountains. I love you BIG 💜

09/17/2026

GOD IS GOOD!
Cannon was diagnosed with Sanfilippo Syndrome, 4 years ago on September 28. It has been a rollercoaster of emotions, challenges, bad days, good days and everything in between days…. The past year and half has been hard, really, really hard - there have been so many days when it was really hard to hold onto hope, but all I had to do was look at Cannon’s face and I was reminded that if you have faith the size of a mustard seed, you can move mountains.

After nearly 4 years on the waitlist to receive disability benefits, a few weeks ago, I got a call that Cannon was finally moving off of the wait list - I thought that was the best news… until today. THE FDA HAS FINALLY APPROVED THE FIRST PEDIATRIC GENE THERAPY FOR SANFILIPPO TYPE A!

We live by the motto “there is always hope” and today we were definitely reminded just how true that is 💜

Crying all the happy tears right now.

08/27/2026

Broken sunglasses? No problem. In Cannon’s eyes, there’s nothing a band aid can’t fix. Mind you, he owns multiple pairs of sunglasses, but why throw out a perfectly good pair? Even if you can only see out of one eye?

This kid gives me a reason to smile every.single.day.

08/21/2026

My bestie had his first day of 3rd grade today. I can’t believe he’s in third grade! I feel like he was just starting kindergarten. Time is a thief. He was so excited to see his school family 💜

Cannon’s day is mostly spent with his one on one paraprofessional aka “school mom” aka MY HERO, and learning through discovery and play. Our focus is Cannon maintaining the skills and vocabulary he has. He is in the Applied Skills classroom, and although he does have a Gen Ed class he doesn’t typically spend too much time there… however this year he is super excited about his Gen Ed teacher so he may be spending a bit more time in there 🙂

It is such a wonderful feeling being able to send Cannon to school, and breathe knowing he’s being cared for and loved - Cannon is A LOT of work, being his mom is incredibly rewarding but also incredibly exhausting! Summer was a challenge, and we are both ready to get back on a schedule and settle into a routine.

Here’s to an amazing school year!

08/21/2026

After the storms that ripped through our town last week, the start of school was delayed a couple times…. But tomorrow it is finally back to school! Cannon is SO excited to start third grade! This is the first year he won’t have Cooper at school with him, but Cannon seems ready to get back to his friends and his beloved “school mom” who he has missed so much this summer! He has gotten used to lazy mornings so I’m sure it will be an adjustment getting out the door so early, but we are ready to get back to the daily grind. Enjoying some fresh air at big brothers football practice then it’s home for bedtime and the start of an amazing year tomorrow 💜

08/08/2026

Cannon always has a way of making me smile …. The other day he poked himself in the eye on accident and made his own eye patch… last night I went up to bed and saw Cannon had set up security above my bed 😂 I love this little guy and all of the smiles he brings. Happy Saturday!

07/31/2026

It’s been a minute!

Summer is normally my favorite time of year - with 4 kids the school year is chaotic with school, sports and just life in general! Summer is always a much needed time to enjoy having fewer commitments, lazy nights outside, mornings that aren’t rushed, and time to vacation, and just simply enjoy the time together. This summer has been different than most. This summer we’ve adapted to some changes, prepared for some more changes, and dealt with some struggles as the heat and air quality have drained Cannon causing him to not be able to enjoy the things he typically does like being outside, running around, swimming, and even being around other kids. There were a couple weeks where all he wanted to do was lay in bed and watch TV or his iPad, and would only come outside after the sun had set. It has become our routine to come outside every evening and look for the moon, Cannon has really enjoyed the nights the moon has been orange.

The past few days Cannon has gained a little energy and spent some time outside, I put a movie screen and couch in the garage, and Cannon enjoys watching a movie in the evening, being able to get some fresh air with the garage door open, but still be “inside”. He spent a little time in his pool yesterday (he tried to make it a skinny dipping experience but I told him we had to keep it G rated 😂).

We have just less than 2 weeks until it’s back to school so we’re hoping to squeeze in some swimming and park visits and soak up the last of our lazy days before our schedule becomes chaotic once more.

Even on the days Cannon hasn’t felt well, he still has that million dollar smile, gives the best snuggles, erupts in his belly laugh when watching his favorite shows, loves being with his dog, and reminds us all it’s his world, and we’re just living in it - he’s BOSSY! But we wouldn’t have it any other way 💜

07/02/2026

The crazy hot temperatures have been tough on my little guy…. He has spent a lot of the past few days laying in bed watching TV because the heat just drains him. Yesterday I was able to get him outside on the bounce house for a little bit and he had so much fun! This smile will forever be my why 💜💜

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