I’m Carson!

I’m 6 years old and the entire purpose behind this campaign. Let’s get to know me. After all, that’s why you’re here.

I’m a pretty normal kid

I like the same things as most kids in my grade. I love playing video games and eating McDonalds Happy Meals (only chicken nuggets of course).

Favorite Movie

Space Jam (with Lebron James)

Favorite Person

Mom and Dad and Jaxon and ME

Favorite Color

1. Green
2. Blue
3. Red

When I grow up...

I wanna be a football player

My Story

When Carson was a baby his milestones were delayed. As parents already of a toddler we understood that sometimes that happens. Milestones are more of a child to child guideline not something that is mandatory. So we never had any real concerns or became worried. He eventually walked and stood which was relieving. He was a little behind but still meeting those milestones, even if those steps and stands were a bit wobbly.  It wasn’t until a timehop on Facebook showed that at Carson’s age, Jaxon was already walking up stairs holding large stuffed animals. That hit us in the gut something fierce. 

 After consulting with our physical therapist, who was working with our oldest son, we realized there were milestones Carson had completely missed. We had no idea. He quickly was enrolled in AZEIP and started working in-home with a physical therapist. It was then that she made a statement that altered the rest of our lives as we knew it. Words I will never forget, “if Carson was my son, I would take him to a neurologist as this didn’t present as typical low muscle tone.” 

 This was the beginning of a lot of hospital visits for us. Blood draws, specialists, spit collections, and an EMG with sedation. An EMG, or Electromyography, is a diagnostic procedure to assess the health of muscles and the nerve cells that control them (motor neurons). All of which weighed heavier and heavier as time went on and it seemed that no answer would be found and hope for a normal life seemed ever fleeting. Finally, we found the doctor who would give us answers. It turns out he had a rare disease that we had never heard of; recessive RYR-1. Carson was diagnosed right before his 3rd birthday. 

 There’s not a book in the world that prepares you for the word “degenerative” when said about your child. Nothing can prepare you for that. Denial becomes very comforting as you navigate the emotions that come with such a heavy diagnosis. The options we were handed were, Carson could be okay (the best outcome), he could decline a bit but level out (still not a worse case scenario in this cruel disease) or he could just continually deteriorate. Here we are having this conversation with our 2 year old son in our arms. This was all the fuel we needed to begin researching every avenue for service to help Carson. Come what may! We started seeking medical counsel thanks to an amazing woman from AZEIP (Arizona Early Intervention Program). 

 Carson has a scroll’s worth of specialists, doctors, and therapists that he see’s regularly. His mutation affects his overall lung function and his ability to walk. Among those specialists is a Pulmonologist. 6 months ago Carson had an appointment with his Pulmonologist where we actually learned that in the span of 6 months Carson’s lung function had actually decreased by 20%. 

 RYR-1 has weakened Carson’s leg muscles so rapidly that Carson is now limited to a wheelchair for most of his day. This is the safest way for him to navigate a busy day as a 1st grader. There are moments where Carson wants to be like everyone else and we allow him to stand but we have to be very diligent with him as those weakened leg muscles give out leading to frequent falls.

 Now that we got all the formalities out of the way let’s focus on the little boy who, in our opinions, is the absolute coolest little man! Spending just a few minutes with him can brighten your entire day. He is sassy, questions everything and is just all around the most hilarious human. He gives the world’s best hugs, says he’s strong as the Hulk and as fast as the Flash. He is still learning to navigate his power chair so don’t walk in front of him, Flash gets distracted easily. Regardless of the cards he’s been dealt, you will never hear him complain. He’s determined to be just like everyone else and honestly, nothing will stop this little man from reaching his dreams and conquering the world, limitlessly!