Hunter’s Duchenne’s Journey

10/19/2026

10/16/2026

***Absolutely no actual rant intended!!!

Yesterday was Hunters IEP. Let me start with, we have been INSANELY well taken care of by Hunter’s middle school. I do expect a full fight on my hands starting next year, however I truly feel blessed for Hunter’s middle school team! ❤️

His resource team (unbeknownst to me) was in full run mode yesterday before our IEP. Because Hunter is in leadership this year as grade 9, some leadership field trips are happening. Teachers (again just lack of experience with physical disabilities) didn’t think of all pieces (such as bathroom) when it comes to a non ambulatory child. So, behind the scenes resource caught wind, as did OT and both raced to the location of the elementary school to ensure Hunter was set up to perform his leadership responsibilities. I was made aware only after they had a full plan in place. 👏

I did get a giggle out of the team when a bit of frustration let go that the world is not accessible! Make the world accessible! 🤣🤣🤣🤣

Yes team! Us special needs caregivers/parents are advocating for this, because I promise you….. very little in the world IS accessible!

I had to share! All in all! This team is hands down THE BEST!

10/13/2026

Its BCCH day!

Todays agenda!
8am Nursing Neurologist check in.
9am Neutrologist and Interns, plus Social Worker, Orthapedics etc.
11:30 Meet with the lady from BC Wheelchair Basketball 🤣 in the parking lot
12:45 Cardiologist
1:45 HTV
2:30 Xray

Home time

10/03/2026

We made it to October!

October seems to be a busy month for us! October is Canadian thanksgiving, hunting season and two Saskiw bdays! AND OBVIOUSLY HALLOWEEN 🎃🧛👽🧙‍♂️👹🎃. (Kinda a big deal in our world!)

But October also brings BCCH Neurology Clinic. This is always a stressful time, as most Hunters specialists test and give us results at this time. I always hold my breath a bit finding out where we are declining. Oct 13th brings us one of our busiest clinic to date! Yikes! Starting at 8am we see Orthapedics. 8:30 we see Dr Selby (Neurologist, and her team) which includes Occupational Therapists, Social Workers, Nurses, Interns etc. 12:30 we are at Cardiology, 2:15 we run to HTV clinic (this one scares me a bit, as Hunter’s lungs are definitely one of the serious things affected most at the moment) , and they are now trying to squeeze in Endocrinology (Bone Density X-Ray) at 3:30. We then make the drive 4 hours home. 😮‍💨 no stress right?!? 😅

09/26/2026

Disability humour

09/26/2026

Anyone looking for a great inclusive sport? Hunter’s wheelchair basketball team in West Kelowna welcomes all ages and mobility to play!!! Message us, and we can hook you up with the organizers!

09/26/2026

Hunter is super excited!!!! We have tickets to Metallica May 8th in Vancouver!

As he and his sister bounce with excitement, this momma is busy hoping for other things.

Travel with Duchenne’s asks a tonne of questions. 1. We have nose bleed seats. Is there an elevator? If so, how far in are our seats? We will likely have to use a 2 man lift to get him in and out of his seat. How many times will we need to move him in and out of his seat to use the washroom. Where can we fold and store his wheelchair? Will someone knock it over, or take it? Does the hotel have enough space to manoeuvre his chair? Can he use the bathroom?

These are the questions we need to worry about “to just make it work” for our son so he can have life experiences. 🥰

09/13/2026

As September is Muscular Dystrophy Awareness Month, I thought it would be important to recap on what Duchenne’s Muscular Dystrophy is.

What is it?

Duchenne’s Muscular Dystrophy (DMD) is a severe, progressive genetic disorder that causes muscle weakness and deterioration caused by a gene mutation passed down by the mother.
The DMD gene stops the body from making dystrophin, a key protein.

What is Dystrophin exactly?

Dystrophin is what gives muscles integrity. It acts like a shock absorber to protect muscle cells during movement. Without it, muscle cells get damaged easily and degenerate.

Why does the mother pass it, but mostly boys are afflicted?

It is X-linked recessive, so it mostly affects boys, while women are typically carriers. However, it can hapoen through spontaneous mutation. It will continue to be passed down after that though.

How did you know something was different with Hunter?

Symptoms usually show up between ages two and six.
Hunter was 5. Hunter was having trouble walking, running, and climbing stairs. He fell often, and we started noticing him walking on his toes. Then we started to see Gower's Sign (Children use their hands to push themselves up their legs and body when rising from the floor), and noticed his enlarged calves (Lower leg muscles often look thick because fat and connective tissue replace lost muscle). Because my mother was a manifesting carrier, we knew what we were seeing.

What does his diagnosis mean?

Hunter started by being able to walk run and climb (not ever as strong as peers, but still able to). Most boys need a wheelchair by age 12 - which is exactly when Hunter transitioned. Weakness eventually affects breathing muscles and the heart, leading to serious cardiopulmonary issues. This has started with Hunters pulmonary functioning already. He has machines at night, and nurses on nights I work keep a close watch on his breathing.

What is life expectancy for DMD boys?

Unfortunately no one has a crystal ball, but Complications usually become life-threatening by young adulthood (20’s) though better care helps patients live longer. Unfortunately some of our Duchenne’s Warriors don’t make it passed teenage years.

If you want to know more about Duchenne’s, definitely visit https://muscle.ca

08/22/2026

Interestingly, a few Duchenne’s boys we follow, as well as Hunter in the past have heard “concerns” about their weight.
Hunter is on 36 mgs of Deflazacort daily. This is 5 pills.
Deflazacort, prednisone, and vamorolone are Corticosteroids that reduce inflammation, and improve muscle strength to keep our boys heart, lungs and mobility muscles strong. It might increase mobility and walking, as well as maintain upper body strength.
Its biggest side affect is moonface, and increased weight gain.
People say well, maybe he could decrease food intake.
I thought it would be neat to outline a day in his food journal.
He starts off in the morning with a yogurt and fruit which is great for his gut health. He’ll often have his morning pills with breakfast with milk as he needs daily calcium. If you were to ask Hunter was the ultimate lunch was for him, he’d tell you a picnic lunch! The photo here further explains a picnic lunch. Dinner is always a serving of meat, salad (Hunter LOVES his salads) and often a carb dish. IF he has a desert, we keep popsicles or revellos.
Obviously we allow him a fun snack at lunch during school, and a movie night gets him popcorn with dill pickle seasoning, and an occasional sugar free iced tea or soda, but soda is tough on his kidneys, so again not an everyday occurrence.
These boys already have low self esteem once their mobility starts faltering. Don’t be that person who adds to that stress. Our boys have enough on their plates! Kindness goes a long way! 🥰