Jaxson's Journey with DMD

02/17/2026

As mentioned before Christmas, the second steroid we tried, Deflazacort, didn't go over all for Jaxson either.

Last Friday the 3rd and final steroid option arrived- we haven't started quite yet though. There are a few extra things involved with this steroid- it is taken daily and not a weekend dosing and requires us to have a hydrocortisone due to risk of Adrenal Crisis (second post coming related to this)

Agamree (generic name: vamorolone) is a newer steroid medication approved specifically for boys living with DMD. It works similarly to traditional corticosteroids like prednisone or deflazacort by reducing inflammation, protecting muscle fibers and slow disease progression.

How Is Agamree Different? Traditional steroids are effective, but they can come with side effects such as: Weight gain, Behavioral changes, Bone thinning, Growth delay, but Agamree was developed to keep the muscle-protecting benefits of steroids while reducing some of these common steroid-related side effects. This doesn't mean these won't or can't still occur however.

Clinical studies showed it can help maintain muscle strength and function in boys with DMD. It helps protect muscles and slow disease progression, with the goal of offering similar benefits to traditional steroids but with a potentially improved side effect profile.

It sounds so much better than the first two options, so why not go with this one to begin with? Well, not all boys react the same, and many don't do well on this and do the others. It is also newer than the other two, so not as much long term data available. It's actually not even prescribed by our team at Nationwide in Ohio, so we had to go with our local team for this one. Ohio will not prescribe it as they feel it's too new and the data for weekend dosing on Pred or Deflazacort is stronger right now. However, given Jaxsons response to the other two, they were supportive of us wanting to try this option with our local care team. It's overwhelming, nerve-wracking, but trying to be hopeful. We will see how it goes. 🙏🏼

02/10/2026

They always say on a plane: put your own oxygen mask on first before helping others.

When you care for a Duchenne warrior, that line hits differently.

Because Duchenne isn’t just a diagnosis — it’s 24/7. It’s a progressive muscle-wasting condition that affects every muscle in the body, including the heart and lungs. It means constant monitoring, appointments, medications, physio, equipment, and a mental load that never truly switches off.

Every instinct in you says they come first. And of course they do. But when your child has a condition with no cure yet, when the future feels heavy, when sleep is broken and stress is chronic, carers are running on empty more often than anyone sees.

Here’s the truth we don’t say enough:
Carer burnout is real. And Duchenne families are at high risk of it.

If we collapse under the weight of it all, they lose the person holding their world steady.

Looking after yourself isn’t selfish. It’s protective. Studies show carers under prolonged stress have higher risks of anxiety, depression, heart strain, and immune exhaustion. We can’t pour from empty — and Duchenne is a marathon, not a sprint.

A rested mum is more patient. A supported carer is stronger. A parent who breathes can keep fighting.

Duchenne doesn’t pause. But we still have to protect the human underneath the armour.

Drink the coffee while it’s hot. Take the nap. Go for the walk. Accept the help. Say no without guilt. Your warrior needs you here for the long haul — not just present, but well enough to keep going.

Oxygen mask on first. Then we carry on saving the day. 💙

02/09/2026

visit today with Orthopedics. We are always so thankful for Shriners visits and all the "fun" they add. Helps with doctor anxiety for Jaxson for sure. 😅

I wish every clinic was as good with having childlife care like them- they instantly bring some toys in for him to play with, and interact positively with him before anything else: bonus he gets to always keep the goodies 💖

We currently use Shriners mostly for his night splints/bracing, but it's always good to get more input and opinions on how he is doing. With a rare disease, especially Duchenne, one size or way doesn't fit all.

As expected, tight heel cords and hamstring tightness. More wear of his splints, more stretching needed.

for lunch 😋

02/06/2026

Nick's (dad) Uncle is participating in the Polar Plunge for Special Olympics!

He is a Shriner and has been a great resource and advocate for us as we use Shriners Children's Twin Cities POPs for all of Jaxson's braces and we have loved our experience through them.

If you would like to donate, click here:

https://reg.plungemn.org/participant/michaeltollefson1?fbclid=IwdGRzaAPy9lFjbGNrA_L2TGV4dG4DYWVtAjExAHNydGMGYXBwX2lkDDM1MDY4NTUzMTcyOAABHnuNboxOFSCORkkw8gj3KrZhAKVtyeIAxN3o9Q_-5yR8UH4es5Hnb1O1i3j8_aem_4FIDw0vXcvHvi6BvMmRFww

Show your support for MICHAEL TOLLEFSON & the Polar Plunge by making a donation on their fundraising profile!

02/06/2026

And there is a group of DMD mutations that don't qualify for most of trials and therapies too 💔- like Jaxson

A question we are often ask is which drug or trial can Cure Duchenne.

Although there are clinical trials available to help slow down the progression, noting that each boy responds differently to the trials.

Unfortunately some boys have passed from participating in trials due to side effects / complications and others it has helped them to maintain strength.

Sadly these clinical trials are not available in all countries. Some families have the means to relocate and others it’s impossible.

There are a number of boxes to be ticked for your child to participate in a trial.

Example: The North Star test is heartbreaking where if a boy doesnt get up off the floor in a specific time they don’t pass.

North Star Ambulatory Assessment (NSAA)

The North Star Ambulatory Assessment (NSAA) is a 17-item rating scale used to measure functional motor abilities in ambulant children with Duchenne Muscular Dystrophy (DMD). Developed by physiotherapists, it assesses activities like standing, walking, and jumping, with scores of 0–34, where higher scores indicate better function.

Key Aspects of the North Star Ambulatory Assessment (NSAA):

Purpose: It evaluates the progression of DMD and the effectiveness of treatments in boys who can still walk.

Scoring System: Each of the 17 tasks is scored: 2 (no assistance), 1 (modified method), or 0 (unable to perform).

Focus Areas: The test includes activities such as standing up, walking, climbing steps, lifting the head, and hopping.

Clinical Utility: The NSAA helps track disease progression, with a significant decline often indicating a risk for loss of ambulation (LOA).

Natural History Study: The NorthStar network is the world’s largest natural history study for DMD, tracking over 2,000 individuals to improve clinical care.

Progression Tracking: Typically, scores show stability or improvement until age 8, after which a decline is commonly observed.

The NSAA is crucial for assessing treatment response in clinical trials, particularly for measuring improvements or declines in motor function in young boys with Duchenne.

There is sadly currently no Cure to take away this cruel and fatal condition away.

Some families will choose steroids to help maintain strength because they dont have the option to try get into a clinical trial.

It’s important to end this post with the word HOPE.
Time is everything and I know how it feels to wait. Some days are more difficult than others.

Always keep the Faith 🙏🏻

02/06/2026

Our children are being branded as “the anxious generation.”

But I don’t think people always stop to ask why.

This morning Joshua looked so sad, tears in his eyes before college.
Not because he didn’t want to learn.
Not because he’s lazy.
Not because he’s difficult.
Because his body remembers trauma.

Since his hip and femur fracture fall, his world doesn’t feel safe in the same way. Every corridor, every step, every uneven surface carries a memory his nervous system hasn’t finished processing. Add Duchenne on top of that — a body that already demands constant negotiation — and anxiety doesn’t feel like a weakness.

It feels like survival.

And this generation didn’t grow up in calm waters. They grew up through COVID. Through isolation. Through fear. Through uncertainty adults struggled to understand, never mind children. They lost routines, milestones, friendships, safety nets — and then we wonder why their nervous systems are on high alert.

We talk about anxious children as if it’s a personality trait.
Sometimes it’s not anxiety.
Sometimes it’s grief.
Sometimes it’s trauma.
Sometimes it’s a nervous system that has been asked to cope with more than most adults ever will.

And our kids still show up.
Even on the days they cry.
Even on the days they’re scared.
Even on the days they want to stay in the safety of their rooms.

That isn’t fragility.
That is strength the world rarely sees.

If this is the “anxious generation,” maybe it’s because this is the generation carrying invisible battles we don’t measure properly. And maybe the bravest thing we can do as parents isn’t forcing toughness…
…it’s learning when to hold them close
and when to walk beside them
instead of pushing from behind.

To all parents of the “anxious generation” — your children’s strength is quiet, your love is visible, and neither of you are alone. 💛

02/06/2026

Way to go Sarah DeVries Kasner 💖

02/06/2026

The Government has announced a new £10 million fund as part of the National Cancer Plan to cover travel costs for families whose children are undergoing cancer treatment.

No family should ever be out of pocket because their child has cancer — and this financial support is a welcome step toward that vision.

But I want to broaden the spotlight a little.

Families caring for children with Duchenne muscular dystrophy and other life-limiting conditions face the same relentless travel, appointments, and hospital stays — often for many years, not just months. The costs quickly add up, and they don’t stop when the diagnosis name changes.

When Joshua broke his hip and femur, I calculated just the extra mileage it added, and it came to 800 extra miles on top of our usual driving — so fuel, parking, snacks on the go, childcare rearrangements, and exhaustion. That was just one episode in a lifelong condition, and it showed me how quickly these costs escalate.

We don’t get to choose this path. We don’t get a short window of intense care and then “back to normal.” We show up — again and again — because we love our children and want them to have the best care possible.

Equity in healthcare shouldn’t depend on the diagnosis.

Families caring for children with Duchenne, genetic conditions, neurological conditions, and other life-limiting illnesses deserve the same protection from financial hardship.

Compassion shouldn’t have categories. Support shouldn’t be diagnosis-specific. Hardship doesn’t check a label before it arrives.

So yes — thank you for this fund. But let’s make this moment the start of a broader conversation about financial fairness for all families navigating long-term childhood illness.

No parent should have to choose between being there for their child and keeping the lights on.

02/04/2026

Being a Duchenne mum is basically being a rotating cast of Disney characters… sometimes all in the same hour.

🧹 Cinderella — because life doesn’t pause for Duchenne. The house still runs, the washing still piles up, the appointments multiply. Duchenne is a progressive muscle-wasting condition, but it doesn’t come with a pause button for everyday life.

💭 Eeyore — the quiet philosopher. Duchenne is genetic. It steals muscle strength over time. We carry the knowledge of what it means long-term, the statistics we never wanted to learn, and the grief that sits quietly beside the love.

🛡️ Mulan — fierce advocate mode. Duchenne affects around 1 in 3,500–5,000 boys worldwide. That makes our community small, but our voices loud. We fight for care, access, research, understanding, and dignity — because our boys deserve a world that keeps up with them.

✨ Tinkerbell — finding magic in the smallest victories. A good day walking. A strong laugh. A moment without pain. Duchenne teaches you to celebrate milestones other people don’t even notice — and those moments glow.

🦁 Simba — courage we never auditioned for. Duchenne weakens muscles, including the heart and lungs, but it never touches personality, humour, intelligence, or spirit. These boys are not their diagnosis. They are funny, stubborn, brilliant, loving humans who just happen to carry a heavier backpack than most.

And underneath it all…
❤️ Just mum.
Learning medical language she never asked to learn.
Tracking medications.
Watching for changes.
Holding hope and fear in the same breath.
Loving a child with a strength the world rarely sees.
No fairy tale ending.
But fierce love.
And we carry on.